НОРА

NORA on social networks

Dear friends,

In order to be closer to you, from today you can visit us on our new twitter address: НОРА НВО | NGO NORA . Join NORA on Twitter and catch up with all the information and news on time.

Twitter is designed for short information and fast communication, so follow us on Twitter if you want to be connected and well informed. On Twitter, easily and quickly you can find everything what it is in your interest, all the news and updates.

Also, NORA has an active Facebook page which works great and has over 3,000 fans.

On NVO NORA facebook page you can see many photos of events we attended, congresses, conferences and events organized by NORA. Visit NORA on Facebook and learn about the beginnings of NORA, the path of hard work and constant effort, in with any step forward NORA stands for all of us - for a better living.

Like NORA on Facebook: http://on.fb.me/HdDnw6 ,

Follow NORA on Twitter:http://bit.ly/Ixl8BA.

Visit of Prof. David Fox and Vladimir Ognenovski MD

Dear friends,

it is our honor to inform you, today in R. Macedonia have arrived Prof. David Fox and doctor Vladimir Ognenovski, MD, from the University of Michigan, USA. Professor David Fox is a past president of ACR, American College of Rheumatology, www.rheumatology.org, one of the leading scientific institutions in the field of rheumatology in the world. Doctor Vladimir Ogneonvski is in close cooperation with NGO NORA, the Clinic of Rheumatology in Skopje and the Clinical Hospital in Bitola for many years.

dr.-fox.jpg Prof. David Fox

dr.-ognenovski.jpg Vladimir Ognenovski, MD

The goals of their visit are:

to strengthen the field of rheumatology in our country;

to strengthen the capacities of the Clinic of Rheumatology in Skopje;

to establish a cooperation between the Department of Rheumatology of University of Michigan and the Clinic of Rherumatology in Skopje;

to look in to possibilities of student and personnel exchange and personnel education;

and to strengthen the cooperation with the patient organization NORA.

The working visit in Skopje is going to take place in Monday and Tuesday, 2nd and 3rd of April, where the guests together with the Clinic of Rheumatology and MAAR have organized lectures that will take part at the Deans Hall at the Medical Faculty in Skopje. NORA extends an open invitation for anyone who is interested to hear the lectures of our guest. The lectures are professional medical in nature, but some subjects might be of interest to the patients as well. So please feel free to attend.

Program for Monday, 2nd of April:

- 12:00h. "Rheumatoid Arthritis - half way there", Prof. David Fox

Program for Tuesday, 3rd of April:

- 12:00h. "Model of cooperation between Michigan University and the "Ss. Cyril and Methodius University in Skopje", Vladimir Ognenovski, MD

- 13:00h. "News of the pathogenesis of Rheumatoid arthritis", Prof. David Fox

Installing the first counters with guides for 10 common RMB (rheumatic and musculoskeletal diseases)

Dear friends,

It is our honor to inform you, NORA install the first 3 of the planed 20 "wall mounted informative and educational counters". The first counters were installed at the Clinical Center in Skopje - the Clinic of Rheumatology (hospitalization department and ambulance department), and the Clinical Hospital Bitola - Center for Rheumatology.

Next planned counters will be installed in the cities Stip, Tetovo, Strumica and Kumanovo.
The counters contain short brochures-guides for 10 common RMB (rheumatic and musculoskeletal diseases), whose content is educational and informative. This literature is the first of its kind published in Macedonian language, with purpose of educating patients. In every manual of 12 pages covers useful topics with advices, support, treatment and other topics about which patients are always interested, useful tips for easier handling RMB, and also general information to educate the public.

First, we want to express our gratitude to ELEM - "Macedonian Powerplants", without whose support we would not have these beautiful counters. ELEM is the first company that has supported this project, which encouraged support by other donors for more counters. For counter in Bitola, we owe gratitude to the University of Michigan and the ILAR "International League of Associations for Rheumatology". The following counters to be installed in the above cities, were supported by Hoffman La Roche - Representative Office Skopje.

Gratitude to the management teams of institutions that allowed us to install these counters, but also to the National Health Fund (NHF) of Macedonia that gave us great support and encouragement for the production and distribution of this material.

We do not forget the firms without whom this project wouldn't be accomplished

- Digital Center produce counters and care for their installationand ProPoint that took care of printing materials. Both companies demonstrated superior professionalism and we are heartily grateful to themfor success.

In the near future all information related to these counters, their locations and their contents will be publish here on our site and also on NGO NORA facebook page: http://on.fb.me/HdDnw6.

EULAR AUTUMN CONFERENCE for PARE

(People with Arthritis / Rheumatism in Europe)2011:

MOVE TO IMPROVE

The Westin, Athens, Greece, Thursday, 24 – Sunday, 27 November 2011

The annual Autumn Conference for PARE this year was held from 24^th of November to 27^th of November in Athens. Members of all over Europe were present to exchange ideas and best practices, support each other and find ways to improve quality of life of patients with RMDs (Rheumatic and Musculoskeletal Diseases).

Day 1

Meeting of the Standing committee of PARE

Day 2

Activities and background of the HellenicLeague Against Rheumatism - Dimitris Kassimos

In Greece the situation regarding Arthritis is as it follows:

· 2.500.000 Greeks with a rheumatic disease.

· 70.000- 100.000 with Rheumatoid arthritis.

· 25.000 with Ankylosing spondylitis.

· 1200 children with Juvenile arthritis.

· 1.500.000 osteoarthritis, osteoporosis

· Only 13% of the patients with seronegative spondyloarthropathy and 19% of patients with rheumatoid arthritis see a rheumatologist at the beginning of their symptoms.

· Only 35% of patients with RA see a rheumatologist in the first 6 months.

The way that the HellenicLeague Against Rheumatismsees the development PARE - EULAR/Agora, rheumatologists, health professionals and patients with MSCDs is to work together for the benefit and improvement of the health system at national and European level.

EULAR spotlight – update on recent andfuture activities - Marios Kouloumas - Chair EULAR Standing Committee PARE - People with Arthritis / Rheumatism in Europe)

· EP Interest Group on Rheumatic and MusculoskeletalDiseases – three meetings in 2011 on Research,Active and Healthy Aging and Social and EconomicCosts featuring EUMUSC.NET

· Brussels Declaration on Rheumatic and Musculoskeletal Diseases: implementation on national level

· Hungarian EU Presidency Conference „Burden of Rheumatic and Musculoskeletal Diseases:Challenges in Work Capacity and Prevention of Disability in the EU“

· Horizon 2020 (FP8): Strengthen position of RMDs in the overall framework programme and considerably increase further funding of research in RMDs

Workshops:

· EUMUSC.NET is a collaborative project on common European standards of care and healthcare quality indicators - Ingemar Petersson - It is important for all people with Rheumatic and Musculoskeletal Diseases (RMDs) to get the optimal healthcare, including early and accurate diagnosis, early and effective pharmacological treatment and rehabilitation, as well as surgery when needed. The EUMUSC.NET project is a collaborative network including the EU and EULAR working jointly to achieve this by defining and disseminating up-to-date Standards of Care (SOC) and Health Care Quality Indicators (HCQI) for Rheumatoid Arthritis (RA) and Osteoarthritis (OA). People with rheumatic and musculoskeletal diseases (RMDs) are partners in this work, including additional input from the participants in the 2011 EULAR Autumn Conference for PARE. Suggested versions of SOC:s and HCQI:s for RA and OA were presented and discussed in this workshop, including experiences from an audit process in four European countries.

· State of play – the implementation of the Brussels Declaration on national level and future activities - Neil Betteridge andSören Haar - In October 2010 EULAR launched the Brussels Declaration at the most exciting event of our past years of active European lobbying – the EU Presidency Conference on Rheumatic and Musculoskeletal Diseases. EULAR has developed a toolkit for its member organisations to help them build on the European success and to start implementing the Brussels Declaration at a national level. Based on EULAR’s work and the toolkit, the workshop was discussing the status of implementation in the different EULAR member organisations. Best practice examples from national organisations will be presented to inspire the delegates and stimulate the discussion. The workshop also introduced future activities of EULAR and in particular look at Horizon 2020, the new research framework programme, currently debated within the Commission at EU level.

· Latest developments on the topic of work – updates around the EULAR Charter for Work and the Fit for Work Initiative - Maarten de Wit - Work is a very important area of life for people with RMDs and has been a focus at the past two Autumn Conferences. This workshop was build on what has been achieved in the past years by EULAR and introduce the different tools which have been developed to support the national organisations in their efforts. The EULAR Charter for Work, the Working Wonders Travelling Exhibition, the Winning Ways to Work toolkit and the latest EULAR project, the video on adaptable working and supporting presentation and guide, will be introduced and best practice examples will demonstrate how national organisations can use the developed materials. With EULAR being part and Maarten de Wit a member of the Fit for Work Europe Coalition this important and relevant project and its latest activities were also introduced.

· How to activate and include young people with RMDs - Epp Adler - The situation for young people with RMDs is very different from that of adults. This workshop was investigating how national organisations can successfully engage with and support young people with RMDs and look at ways in which organisations can involve young people and enabled them to make an active contribution. This workshop explored the barriers to engaging with young people and ways in which these can be overcome.

Poster exhibition – annual poster exhibition for best poster and best campaign for The World Arthritis Day – Move to Improve.

Day 3

1) Osteoarthritis: burden of the disease and therapeutic options - Maxime Dougados, Rheumatologist, René Descartes University; Cochin Hospital, PARIS, France, EULAR president

· Definition / Diagnosis of osteoarthritis

· Burden of the disease

· Therapeutic options

· EULAR recommendations

2) Recommendations for physical activityand exercise for the management on hip and knee osteoarthritis - Thea Vliet Vlieland, Department of Orthopaedics, Leiden University Medical Center, The Netherlands

· Introduction exercise and physical activity

· Current care in hip and knee OA

· Initiatives to improve care: Development of Eular Recommendations for the non-pharmacological management of Hip and Knee OA

Workshops to discuss the draft EULARDocument on Physical Activity for peoplewith RMDs - Each of the workshops was discussing aspects of the Document on Physical Activity to provide an opportunity for people with RMDs and representatives from national organisations of PARE to review the document and give their feedback, as well as looking at what materials could be provided to support campaigns.

Workshop 1: Moderator: Ingemar Petersson - This workshop focused on the first part of the document which provides a context for why it is important that people with RMDs should be physically active.

Workshop 2: Moderator: Hans Bijlsma - This workshop focused on the second part of the document which specifies the healthbenefits of physical activity for people with RMDs.

Workshop 3: Moderator: Kеre Birger Hagen - This workshop focused on the part of the Document dealing with the ‘calls to action’ requiring policy makers, health service providers and sports bodies to make changes that can encourage and enable people with RMDs to be physically active.

Workshop 4: Moderator: Thea Vliet Vlieland - This workshop focused on what information might make the Document stronger and what support materials EULAR could provide to national organisations of PARE to help them in their campaigns to help people with RMDs to be physically active.

Day 4

Psychological aspects of physical activity: Motivation, taking responsibility and Benefits - Rinie Geenen

Workshops:

· Physical and psychological barriers to participating in physical activities – individual perspective - Rinie Geenen - This workshop looked at the physical, psychological and social barriers that prevent people with RMDs from being physically active. Having identified what might prevent individuals with RMDs from being physically active this workshop then focused on finding solutions that would help individuals to overcome these barriers.

· Physical and psychological barriers to participating in physical activities – organisations perspective - Christina Opava - This workshop looked at the physical, psychological and social barriers that prevent people with RMDs from being physically active. Having identified what might be preventing people with RMDs from being physically active, this workshop then focused on finding ways in which national organisations could help them to become physically active and what support EULAR might provide to national organisations.

· Exercise programmes for people with RMDs (30+): Best practice on a national level - Maria Batziou - This workshop looked at the physical, psychological and social barriers that prevent peoplewith RMDs who are over the age of 30 from being physically active.The workshop also looked at the types of physical activities that might be suitable for differentage groups in people over 30 and what national organisations could do to help these agegroups be more physically active. Workshop 4:

Exercise programme

· Exercise programmes for young people with RMDs (18 – 30): Best practice on a national level - Epp Adler - This workshop looked at the physical, psychological and social reasons that might specifically prevent young people with RMDs from exercising, participating in a sport or physical activity, with consideration to external factors, such as gender differences and whether the young people are in education, in work or unemployed. The workshop also focused on identifying the types of physical activity that young people might enjoy, the type of environment that might encourage them to participate and generating creative solutions to encourage and motivate young people with RMDs to become and remain physically active, including what communications channels could be used by individuals and national organisations to reach young people.

The Autumn Conference of EULAR – PARE is a good way for the national patient organizations to exchange ideas and support each other. Every organization is working in its own country, but with mutual support, there will be more success. The quality of life of people with RMDs should be better, not only in the field of treatment but also in the field of working environment and participation in society. We hope that every year this conference will be a support for cooperation and further successes in the fight for patients’ rights.

October 12 - World Arthritis Day - Press Conference

To celebrate the "World Arthritis Day" – 12^th October, this year the Nongovernmental Organization for Rheumatism & Arthritis - NORA, held a press conference in the Conference Hall at the Reporters Club, on Wednesday, 12^th October, at 12.00h.

The key message of the President of NORA - Dragan Chichikj, was that the impact of rheumatic and musculoskeletal diseases (RMDs) in R. Macedonia and the world is enormous and still growing. More than 120 million people in Europe suffer from RMDs, 200 thousand inhabitants in R. Macedonia have RMDs. EU spends over 240 billion Euros annually because of disability, early retirements, hospital costs, drugs ... In R. M. Modestly we can say that annually is spent millions of Denars, and even millions of Euros.

Significant steps to improve the rights of patients in R. Macedonia, NORA made with the "Platform for development of rheumatology in R. Macedonia", which was submitted to the National Health Fund and the Ministry of Health, and also with the" Guidelines for treatment of RA", which will contribute towards proper treatment of one of the most severe autoimmune diseases. The National Health Fund has already answered to what can be done in terms of the Platform, and about what kind of changes should be made so we can reach greater success, while the answer of the Ministry of Health is expected this month.

A major step towards European standards for patients’ rights is the campaign for implementation of the "Brussels Declaration on RMDs" , which was first launched in R. Macedonia by NORA with cooperation of EULAR - "European League Against Rheumatism" on June 17^th this year. With the implementation of the recommendations of the "Brussels Declaration on RMDs," there is a hope for full inclusion of people with RMDs in our society.

Dragan Chichikj - President of NORA, along with Suzana Bozarova - Vice President of NORA and Lazo Efremov - General Secretary of NORA, stressed the need for early diagnosis, which is really a challenge for doctors and patients. It requires a series of tests which ultimately have to determine the patient's treatment and the need for a change of his lifestyle.

Problem in R. Macedonia is the lack of dispersion of rheumatology through the cities of R. Macedonia. The solution is clearly to reach a decision about approving new specializations for doctors and dispersion of the same in different cities. That way, patients through R. Macedonia can go to rheumatology specialists more often than they so just in Skopje.

With the increase of the budget of the Rheumatology Clinic in Skopje for 26 million Denars, treatment with biological medicine was provided for some of the patients that have most serious condition, which is a great step forward. In any case the situation is not optimal; we still need improvement in this area and for this type of therapy. The Rheumatology Clinic has full knowledge of the status of the patients and the need for different kind of therapy.

Suzana Bozarova noted that it is quite an art to live with disease such as arthritis. You always need support, and definitely things are for the better since NORA was founded. Patients have more hope with NORA.

As to the new way of referring patients to specialists and subspecialist physicians, the National Health Fund stated that for patients who are diagnosed with chronic diseases there will be no problems, because they are already in the system and their examinations which are of great importance to their health will be done in an easy way with simple reference from the doctor in primary health to a specialist rheumatologist.

With further cooperation with the Ministry of Health and the National Health Insurance Fund, NORA will search for solutions to the problems that patients face every day. The aim is to improve the quality of life. There has been considerable progress in the field of rheumatology and NORA will continue to support patients, because there is always a way for further improvement in every field.
We hope that through education and easy access to relevant information relating to the RMDs we’ll raise public awareness regarding these diseases. Patients deserve the right of treatment and better quality of life.

In the future we will cooperate with many companies and institutions in various fields, from which first we announce the cooperation with the Yoga Federation of Macedonia. Soon we’ll start a couple of workshops that will significantly help to improve the physical and mental health of patients.

Everyone who wants to join Nora in the fight for rights of patients is welcome. More information about NORA can be found on the Facebook page of Nora and of course the website www.nora.mk. Naturally Nora's office is open if you want to visit, at 28-1 / 1 ,Vasil Gjorgov Str., and the info line of NORA is working from 9.00 until 15.00h., every workday – +389 2 321 43 65.

Sincerely,
Dragan Chichikj
President - NORA

Celebration of World Arthritis Day - 2011

To celebrate the World Arthritis Day 2011, NORA is organizing a press conference where key messages will be presented to the audience. The press conference is on 12th OCtober - Wednesday at the "Journalist Club" in Skopje at 12.00 h.

- The response of the Health Insurance Fund about the Platform for development of rheumatology in R. Macedonia

- The continuation of implementation of the Brussels Declaration on rheumatic and musculoskeletal diseases (RMDs)

- The importance of rehabilitation and physical activity for the patients with RMDs, announcing the alliance between NORA and the Yoga Federation of Macedonia, who together will organize yoga workshops on regular basis.

The purpose is to draw public and state authorities’ attention to the problems of patients with rheumatic and musculoskeletal diseases and possible solutions to those problems.

The Ministry of Health and the Health Insurance Fund of R. Macedonia are invited to participate in the celebration of WAD, so they can give a statement about the progress in the development of rheumatology in R. Macedonia.

Also we are starting cooperation with the Yoga Federation of R. Macedonia under the parole “Move to Improve”. In the months that follow we are going to organize different yoga classes so patients can understand and feel the benefit of this type of exercise.

World Arthritis Day 2011 – Move to Improve

Being physically active is good for general health and can have specific benefits for people with rheumatic or musculoskeletal disease (RMDs), such as helping to keep joints mobile. The most appropriate form of activity will depend on a number of factors including the type of RMD you have, which joints are affected and the level of joint damage etc. This is why it is important to consult your doctor or physiotherapist about the type of exercise you need therapeutically, as well as the type of activities you enjoy doing to keep you healthy.

The term physical activity is used to describe any form of daily activity that involves movement, rather than sitting or lying still. This could include playing with children, doing housework, walking the dog, gardening etc. Being physically active can have many benefits for people with RMDs including releasing stiffness and lifting your mood.

The term exercise is used to describe planned, structured and repetitive movements that are performed frequently, at a given intensity and for a set duration of time. Exercise can be therapeutic, such as in rehabilitation, or taken as an enjoyable way of improving or maintaining:

 muscular strength and endurance

 flexibility and joint mobility

 motor functions including coordination and balance

 aerobic capacity and increased energy expenditure, which can help with weight control

 bone mineralisation contributing to the prevention of osteoporosis

 mood and self-esteem leading to increased positivity

Level of exercise

What will be a hard or difficult form of exercise for one person may be much easier for someone else. For example, walking, cycling or swimming at a gentle pace (low intensity), might have an aerobic effect (increase your heart rate and breathing) for some people, whilst others would need to exercise at a moderate to high intensity to experience the same effect. This will depend on a number of factors such as your age, your general state of health, disease progression and how regularly you have been exercising. Choose a level of exercise that works for you.

Starting out

Always begin gently and build up slowly over time. It is better to do little and often than to try and overdo things and to push yourself too hard when you start exercising.

If you do need to stop exercising for any reason, always start again gently and build up slowly. When you reach your required level of function, you will need to keep up regular activities to maintain this level.

How much exercise

When you repeat activities regularly your body will adapt over time and you will find you can do more with less effort. Regular exercise can also help slow, or prevent loss of function due to disease progression.

Ideally, you should try and do some stretching/flexibility exercises every day, muscle strengthening and endurance exercises two to three times a week and some form of aerobic exercise for 20 minutes three times a week. Luckily, different types of exercise can be combined in one programme!

The key is to find things you enjoy doing so that being active is something you look forward to and becomes part of your daily life.

Did you know?

The word ‘fit’ comes from:

Frequency – how regularly you exercise

Intensity – how hard you exercise

Time – how long you exercise

Now the word fitness is used to describe health and the ability to meet the demands of a physical task.

Common terms used when describing different types of exercise

Aerobic / cardiovascular - Exercise that raises the heart rate and breathing, e.g. walking, cycling, swimming, dancing etc. at a moderate or high intensity

Balance - The ability to control the body’s position when either stationary or moving

Endurance - How long you are able to exercise at low, medium or high intensity

Flexibility - The ability of muscles to stretch. Stretching muscles helps to keep them supple and relieves stiffness

High impact - Exercises where the body weight impacts forcefully against a surface, for example running or jumping

Low impact - Exercises where there is minimal impact through the joints and pelvic floor or where the body is supported whilst exercising, e.g riding a bicycle or swimming

Mobility - The ability of joints to move through a range of motion

Posture - Good body alignment

Strength - The extent to which muscles can exert force by contracting against resistance (e.g. free or fixed weights, bands, moving in water etc)

Weight bearing joints - Joints that support the weight of your body against gravity when you are upright, i.e. your spine, hips, knees, feet and ankles

Weight bearing exercises - Exercises where your body is working or moving against gravity, for example walking (swimming is non-weight bearing because the water supports your body weight)

Weight bearing exercises also help maintain bone density and reduce the risk of osteoporosis

Извор/Source: http://www.worldarthritisday.org/get-involved/activities/cycling

Letter of support to "NORA" from the Cabinet of the President of R. Macedonia

Dear members, supporters and followers of the mission of "NORA", in the further text you’ll be able to read a letter of support addressed to "NORA" from the Cabinet of the President of the Republic of Macedonia about launching of the campaign for implementation of the Brussels Declaration on rheumatic and musculoskeletal diseases.The letter of support arrived at the event on 17th June, when "NORA", first in Europe started the campaign for implementation of the Brussels Declaration.

Regarding your invitation addressed to the President of the Republic of Macedonia, D-r Gjorgje Ivanov, let me in his name to convey his sincere appreciation for the invitation of the launching of the Campaign for implementation of the Brussels Declaration on rheumatic and musculoskeletal diseases in Republic of Macedonia.

You have the unreserved support of Ivanov in the realization of your activities for implementation of the Brussels Declaration. I want to emphasize the importance of cooperation between the government and NGOs, as well as the engagement of all domestic and foreign institutions that can engage and help in realization of this process which is very important for our health care system and the health of our citizens. That is why the support for this project from EULAR is an important part.

I think this event, by discussing current challenges of RMD prevention and treatment, and by exchanging ideas and best practices, will contribute to raising awareness of national and European level in the battle with rheumatic and musculoskeletal diseases, affirmation and promotion of health, and the implementation of the Brussels Declaration will achieve concrete results in the prevention of chronic diseases in order to facilitate the life of all citizens.

Our country should have the RMD as a priority in its agenda, because only the recognition of the importance of RMD means that we are aware of the burden of these diseases and the lives of our citizens, the burden of sustainability of health care and social systems, and productivity of the economy as a whole. We should be aware that if we don’t take certain actions in the present, the problem may increase in upcoming decades.

Expressing once again the full support of President Ivanov about implementation of the Brussels Declaration on rheumatic and musculoskeletal diseases, I wish you success in your work, with the aim of improving health and quality of life of people living with rheumatic and musculoskeletal diseases.

Deputy General Secretary,

Luben Arnaudoski

Let’s act now!

From 21th to 28th of June, representatives of NORA were in Estonia, participating in sharing ideas, discussions, workshops, presentations and other activities together with representatives of Estonia, Finland, Germany, Ireland, Greece, Italy, Slovakia, Sweden.

Themes that we were talking about were: "International possibilities for young people". Simulation game, “How to make a youth exchange?”, “How to make society more aware and more tolerant towards special needs?," My life with a secret" at Solaris, being active in associations, improving your possibilities, how to improve youth participation and co-operation on local and European level, how to make projects.

We also prepared a public event in a shopping mall in Tallinn, Estonia – Solaris. Our goal was to raise awareness regarding rheumatic and musculoskeletal diseases. Through different games, visitors learned a lot about the characteristics of rheumatic and musculoskeletal diseases and how patients cope with the consequences on daily basis.

With this we prove that the best way to success is certainly – cooperation!

BRUSSELS DECLARATION IN R. MACEDONIA

The impact of rheumatic and musculoskeletal diseases is growing, more than 120 million people in Europe suffer from rheumatic and musculoskeletal diseases and the budget of the EU countries spends 240 billion euros annually because of disability, early retirements, hospital costs and medications.

NORA (Non Governmental Organization for Rheumatism and Arthritis), first in Europe , launched the campaign for implementation of the recommendations from the "Brussels declaration on rheumatic and musculoskeletal diseases".

At a press conference and panel discussion held on June 17, 2011, in the conference hall of Hotel Arka, there were representatives of EULAR (European League Against Rheumatism): Prof. Maurizio Cutolo, President - elect of EULAR; Mr. Neil Beteridge, Vice President of EULAR - PARE, UK; Ms. Jacqueline Mäder, Chairperson of the Standing Committee of People with Arthritis/Rheumatism in Europe (PARE), Switzerland, Prof. Nemanja Damjanov, General Secretary – elect of EULAR; and Macedonia - representatives of the National Health Insurance Fund, the Bureau of Medications, the Rheumatology Clinic in Skopje - prof. Dr. Jordan Calovski, and the Cabinet of the President of the Republic. Macedonia, Mrs. Florija. L. Maloku.

On the morning meeting the representatives from Macedonia and EULAR discussed about important issues for treatment optimization of rheumatic and musculoskeletal diseases in R. Macedonia.

Dragan Chichikj President – “NORA” said that there are 40,000 people with rheumatic and musculoskeletal diseases and the implementation of the recommendations of the "Brussels Declaration on rheumatic and musculoskeletal diseases" would be overwhelming support for dealing with these diseases.

"That is why we are proud that first in Europe we are starting this campaign for implementation of the recommendations of the "Brussels declaration". For Macedonia is particularly important to popularize the field of rheumatology, to recognize the importance of the socioeconomic impact of rheumatic and musculoskeletal diseases, to ensure the right of patients to participate fully in society and patients access to high-quality care."

Cooperation with European organizations and health institutions in Macedonia is of great importance because it is the only way to proper and sustainable solutions and improvement of patients lives. Ms Ms. Jacqueline Mader, Chairperson of the Standing Committee of PARE, and also a patient - diagnosed with osteoarthritis, stressed the need for strong cooperation between all member organizations of EULAR.

"We should have the same goal to speak with one strong voice in Europe. Inclusion of organizations - members of EULAR is essential. It is good that in Macedonia there is support from the institutions in health, because it means that patients have a greater chance for a better quality of life."

Mr Neil Betteridge Vice President EULAR - PARE from UK stressed that Macedonia has the chance to learn from many of the organizations in Europe and vice versa.

"Patients are those who are true experts on their illnesses, because they live with symptoms for many years and their opinions are important for improving treatment. In Europe the situation is not perfect, but patients have their rights and we must not leave them on the margins of society. I think that it is important for Macedonia to have “National Strategy” for dealing with these diseases, and the ”National Platform” of “NORA” is a good beginning, and it should be supported by Macedonian health institutions, and the Macedonian Government."

Prof. Maurizio Cutolo, President - elect of EULAR, noted the importance of education for patients, doctors and health proffesionals.

"Education is the right way to improve the situation of rheumatic and musculoskeletal diseases. Symptoms should not be covered, because in that way the disease is disguised and it’ll come to a stage when it is too late to react properly. Early diagnosis along availability of new treatments remains essential. Primary prevention for Macedonia is also very important. There has to be a proper optimization of medications."

Prof. Nemanja Damjanov, General Secretary – elect of EULAR, compared the situation in Macedonia with the situation in Serbia which is now much improved for patients. He said that funds have to be redistributed.

"You should invest in early diagnosis of rheumatic and musculoskeletal diseases and health institutions in Macedonia are those who need to help in solving the problems of patients."

Prof. D-r Matija Tomshich of Slovenia supports the positive changes that occur in the area of health, especially the increase the budget of the rheumatology clinic by 50%, so more patients can have access to treatment.

"Every patient deserves to be treated properly. Progress is not easy, but good cooperation between countries leads towards improving the conditions for patients."

Prof. D-r Jordan Calovski, director of the Rheumatology Clinic explained that a major problem is that there are not enough subspecialist who treat these diseases, but for this purpose there are a lot of educational training seminars and there is hope for improvement of the situation. In further collaboration with EULAR and NORA we will try to make the right decisions for patients.

The National Insurance Health Fund and the Bureau of Medications also support patients in their fight for better quality for life. Changes are needed so patients can have better treatment, and in the future plans optimization of medications will be made.

The president of R. Macedonia, Mr. Gjorgje Ivanov, sent a letter stressing the need for cooperationbetween countries for improvement of the situation of patients with rheumatic and musculoskeletal diseases. The recommendations from the "Brussels declaration" are a good step forward for greater quality of life for patients.

After the press conference and panel discussion followed the lecture of Prof. Maurizio Cutolo about risk factors in relation to autoimmune diseases.

"Due to the presence of estrogen women are more likely to develop autoimmune disease than men. Rheumatic diseases are more common in older men also, because of the higher presence of estrogen. As prevention is best to take into account the impact of vitamin – D, hormone that is produced while we are exposed in the sun and I would recommend exposure to sun rays for half an hour a day, without protection."

Furthermore the professor continued to speak about corticosteroid therapy and how it is best administered at night because the immune system is most active during the night. It is therefore important to have a good sleep. People who don’t sleep, lose their immunity.

With the implementation of the recommendations for dealing with chronic diseases from the "Brussels declaration", with the introduction of new drugs on the positive list and with the publication of protocols for treatment in the Law Journal of the R. Macedonia, we expect more effective treatment for patients.

AGENDA 17 June

IMPLEMENTATION OF THE BRUSSELS DECLARATION ON RHEUMATIC AND MUSCULOSKELETAL DISEASES

Organised by the Non-Governmental Organisation for Rheumatism & Arthritis – “NORA” on Friday, June 17, 2011 at the Hotel Arka in Skopje, Republic of Macedonia

11:00h – 12:45h

Press conference and panel discussion with EU representatives and representatives from the Health Ministry of R.M., the National Health Fund , the Bureau of Medications , and other institutions.

12:45h – 13:15h

Coffee break and snacks

13:15h – 15:15h

Scientific Lecture by Professor Maurizio Cutolo, President Elect of EULAR:

· Risk factors and causes of autoimmunity

· Possible Prevention of Rheumatic Diseases

· Treatment optimizations

Globus Magazine - Interview with Neil Betteridge

www.globusmagazin.com.mk/

EULAR Vice President, representing PARE (People with Arthritis/Rheumatism) organizations - guest in Macedonia for starting the campaign for implementation of the Brussels Declaration.

Rheumatic and musculoskeletal diseases (RMDs) represent an enormous burden on European societies. These diseases affect more than 120 million European citizens and their families. Not only are RMDs the main cause of disability and early retirement among workers and represent a burden of 240 billion Euros every year, but they also impinge on the productivity of our economies and put the sustainability of our health and social systems at risk.

Macedonia is not exception from this impact of the RMDs. From this aspect from 15 to 19 June a delegation from EULAR is coming to Macedonia. This visit is organized by NORA (Nongovernmental Organization for Arthritis and Rheumatism). The focus is on the field of rheumatology in the Macedonian Health System. This visit will help in promotion and development in the field of rheumatology and also NORA together with EULAR is starting a campaign for implementation of the Brussels Declaration in Macedonia. One of the EULAR representatives is Neil Betteridge - EULAR Vice President, representing PARE (People with Arthritis/Rheumatism) organizations.

Interview with Neil Betteridge

EULAR Vice President, representing PARE (People with Arthritis/Rheumatism) organizations

Neil Betteridge (NB) developed juvenile arthritis when he was three-years-old. Long before he knew of phrases such as wheelchair accessible, he was facing disabling features like inaccessible transport and school buildings. Lucky enough to have recuperated well in his adult life, he was able to find a profession in which he could address some of the issues he encountered in his childhood.

Currently the chief executive of Arthritis Care, Neil was closely involved in creating the first disability legislation in the UK (Disability Discrimination Act 1995). He chaired the UK Government’s Disabled Persons Transport Advisory Committee, and is still a Patient and Public Adviser to the Department of Health in England. From 2001 to 2005, Neil was EULAR Vice President representing the patient organisations, the former Chair of the PARE Manifesto board, and was also Chair of the UK national representative in PARE – The Arthritis and Musculoskeletal Alliance (ARMA). He is now serving a second term as EULAR Vice President.

Your key EULAR position is a huge commitment of time, energy and responsibility. What made the current work of PARE so attractive that you decided to come back?

For me, this is a phase two project. From 2001 to 2005 my priority was to integrate PARE’s activities into the overall work of EULAR. My mantra was ‘nothing about us without us’, meaning EULAR’s work is most effective when the person/patient is at the centre of it. I was lucky enough to work alongside presidents such as Josef Smolen and Tore Kvien who completely recognised the value of greater collaboration, something which Professors Breedveld and Emery have continued to develop enthusiastically.

Which projects/activities would you like to see being developed and strengthened during the next four years?

Now that EULAR’s various stakeholders are fully and positively committed to partnership, we have new opportunities for pioneering work. For example, the model of involving people with rheumatic diseases in all of EULAR’s work, including research and the production of guidelines, is a progressive model from which the whole world can learn. But there are challenges for all parties too, and representatives from PARE associations across Europe need support. This includes support to develop and implement models of effective collaboration (it can be very intimidating to step up and work with world renowned clinical experts). Help with translation costs is sometimes needed. Doctors have to learn English for their profession, but volunteers with rheumatic disease associations do not. But it is on campaigning work where people with rheumatic diseases most need to lead. Politicians, journalists and the general public always listen more attentively to people who understand a particular condition first-hand, than they do to professional bodies who can sometimes be dismissed as lobbying for their own professional interests. We have already seen great partnership work within EULAR to persuade the EU to do more for people with rheumatic diseases. In my view this increase in profile is set to rise dramatically over the next few years. These are very exciting times for us.

Republic of Macedonia first in Europe – launching a campaign for:
IMPLEMENTATION OF THE BRUSSELS DECLARATION ON RHEUMATIC AND MUSCULOSKELETAL DISEASES

“Rheumatic and musculoskeletal diseases in focus of media and politics”

Organised by the "Non-Governmental Organisation for Rheumatism & Arthritis - NGO NORA" with coordination and support from "EULAR - The European League Against Rheumatism" on Friday, June 17, 2011 at the Hotel Arka in Skopje, Republic of Macedonia

In order to address this strain on individuals and societies, the Belgian EU Presidency organised a Conference on Rheumatic and Musculoskeletal Diseases in October 2010. The goal of the EU Presidency Conference was to develop concrete recommendations to the European Union and its Member States on different aspects related to the prevention and management of these disorders. These recommendations, later known as the “Brussels Declaration on Rheumatic and Musculoskeletal Diseases” (see attachment), fed into the EU Council Conclusions “Innovative approaches for chronic diseases in public health and healthcare systems”, adopted on 7 December 2010.

To respond to the challenges posed by RMDs and to start putting the recommendations adopted at the EU Presidency Conference as well as the EU Council Conclusions into effect, we -NGO NORA- will host an event together with EULAR (the European League Against Rheumatism). The aim of this event is to start a national campaign for implementing the “Brussels Declaration”.

Three events will take place at the Hotel Arka in Skopje on 17 June 2011 (please see the agenda attached). They will bring together representatives of all stakeholders who are important in the health system and for the health of Macedonian citizens, and will be well covered by a wide range of national media.

The EULAR delegation consists of approximately 15 members including:

- Prof. Maurizio Cutolo,President Elect of EULAR, Italy

- Ms. Jacqueline Mader, President-elect of the Standing Committee EULAR - PARE, Switzerland

- Mr. Neil Beterige, Vice President of EULAR – PARE, Great Britain

Invited participants from Macedonia are:

- The Health Minister, Mr. Bujar Osmani

- The Director of the National Health Fund, Ms. Maja Parnardzieva Zmejkovska

- The Director of the Bureau of Medications, Mr. Ilcho Zahariev

NORA, member of EULAR since 2009, is are proud to host this event and we are sure this will be a great opportunity for exchanging ideas and experiences in order to better fight RMDs in Macedonia and Europe. Therefore, we sincerely look forward to your participation!

Should you need more information on the event, please do not hesitate to contact us – NGO NORA (Tel.02 321 43 65,e-mail:office@nora.mk)

BRUSSELS DECLARATION on RHEUMATIC AND MUSCULOSKELETAL DISEASES

• Whereas rheumatic and musculoskeletal diseases affect more than one in four Europeans (120million) of all ages and are the single greatest cause of physical disability, comprising the single greatest socioeconomic cost due to long term work absence and the payment of disability benefits;

• Whereas people with rheumatic and musculoskeletal diseases frequently have severe limitations to their independence as individuals and face discriminatory policies and attitudes that limit their full participation in society ;

THEREFORE WE AS REPRESENTATIVES OF THE RHEUMATIC AND MUSCULOSKELETAL DISEASES COMMUNITY, PEOPLE WITH ARTHRITIS, PHYSICIANS AND OTHER HEALTH PROFESSIONALS IN EUROPE, SUGGEST THAT

1. The European Union and its Member States should recognise the socioeconomic importance of rheumatic and musculoskeletal diseases of all ages and assign them appropriate priority;

2. There is an urgent need to prioritise basic, and clinical research regarding the causes, predictors, management and impact of these chronic diseases;

3. The European Union and Member States should ensure that people with disabilities related to rheumatic and musculoskeletal diseases have the right to full inclusion in society; this encompasses optimisation of environmental and life-style factors, the availability of self-management tools and respect for the right to a flexible education and work environment ;

4. People with rheumatic and musculoskeletal diseases should receive prompt access to high quality care, ideally in specialised centres, thus maximising long-term quality of life;

5. Management of rheumatic and musculoskeletal diseases should be in accordance with evidence-based recommendations in every European Union Member State;

6. People with rheumatic and musculoskeletal diseases are experts in living with their condition and should be involved in the design, delivery and evaluation of their services.

AND THEREFORE ASK THE EUROPEAN COUNCIL, COMMISSION AND MEMBER STATES TO ENSURE THAT THESE RECOMMENDATIONS ARE IMPLEMENTED BY A EUROPEAN STRATEGY AND NATIONAL ACTION PLANS

Eular Brussels Office -Avenue des Arts 39 – 1040 Brussels

T : +32.2.513.77.02 – F : +32.2.502.77.03

Brussels@eular.eu – www.eular.org

NORA is not alone - historic day for NORA

19th of May is a historic day which will be remembered in NORA. After 3 years, some of the most important and most needed goals of the organization, occurred in one afternoon!

For starters we want to thank the journalists, the media wholeheartedly supported us to reach out to and improve conditions for patients. Media support is indispensable and necessary and we know that our voice together with them is much stronger. Health Care Journalists are among the most meritorious in improving the health system, and thereby the lives of patients. We thank them on behalf of every patient in the RM.

Certainly without the cooperation of the Macedonian health care institutions, positive changes are not possible.

Special thanks to the Director of The Health Fund in R. Macedonia, Ms. Maja Parnardzieva Zmejkova. Among the institutions of health, the most regular contact we have is with Ms. Zmejkova because of the simple fact that she always finds time to receive us, and listen carefully to the patients’ side and their suggestions. We feel free to claim that Ms. Zmejkova is one of the most dedicated people in the field of health care in Macedonia, and we thank Ms. Zmejkova for her commitment, support and leadership.

Deputy Minister of Health Professor, D - r Vladimir Popovski, is one of the founders of the “Coordinating Body for Development of Rheumatology in the Republic of Macedonia". Prof. Popovski actively participates in the work of this body, and his leadership and professionalism are indispensable for successful scientific work of this body.

Thanks to the Minister of Health, Mr. Bujar Osmani and The Director of the Bureau of Drugs Mr. Ilco Zahariev who had time to hear about our problems in many occasions. We hope this cooperation will continue with enthusiasm.

The Director of the Clinic of Rheumatology Professor, D - r Jordan Calovski, and the entire staff of the clinic, and in particular Prof. Mane Grlichkov and Prof. Nada Marina, play one of the most important roles in the development of rheumatology in the R.Macedonia. Most importantly, they care for the relationship patients - doctors, and we thank them for that.

The Guidelines for Treatment which were submitted by the Clinic of Rheumatology soon will be published in the Law Journal, in which case they will be legalized. It means a lot to patients, because finally there will be rules for treatment. Guidelines for treatment mark and establish the standard of care which every patient should get.

With a budget increase for the Clinic of Rheumatology of 50%, the number of patients who receive biological therapy is increased. Moreover, the additional funds, said the Clinic, will be used for all other drugs that are needed. This is a good start, but it is still not the optimal, to which Macedonia will be close to modern world standards.

We must not forget our supporters from the pharmaceutical industry, who always unconditionally help us to realize our projects, and have understanding for the patients’ problems. These projects help patients to implement their activities and thus improve the conditions of treatment and overall development in all fields of medicine.

We have no words that can express our gratitude to the project coordinators of EULAR – Birte Gluesing and Florian Klett, together with Federico Toress and Ingrid Pőldemaa. They supports us in our mission to establish better life for the patients in RM. NORA with the help of EULAR will be the first in Europe to start a campaign for implementation of the "Brussels Declaration". For us EULAR is a source of inspiration and enthusiasm to keep on fighting for patients rights.

We can’t forget about Prof. D - r Mateja Tomshic, Director of the Rheumatology Clinic in Ljubljana. D - r Tomshic in his three - month visit to our country, played a major role as an expert and advisor in the preparation of guidelines for treatment. But most importantly for us, D - r Tomshic together with prof. D - r Nada Marina, unconditionally supported us as patients and wherever they were needed, we were together, shoulder to shoulder.

Also an important contribution to the development of rheumatology in Macedonia has D - r Vladimir Ognenovski, rheumatologist specialist of the Department of Rheumatology, on Medical Faculty of Michigan in USA. D - r Ognenovski is a great advocate of decentralization of rheumatology and expanding its facilities in other cities, above all, his native city, Bitola. D - r Ognenovski visits the clinical hospital in Bitola, several times a year and with a tremendous desire and passion, voluntary examines and advises all patients from that region. D - r Ognenovski is personally credited for many projects implemented in Macedonia with the support from ILAR - International League for Rheumatism and Arthritis.

NORA's work goes on. After several months of research and preparation, we proposed "Platform for the development of rheumatology in Macedonia". In this document of approximately 30 pages, we included the whole experience from NORA, in this document there is everything that NORA NGO as an organization of patient believes and stands for. The platform is closely associated with the campaign that we are going to start, about the implementation of the "Brussels Declaration on muscle-skeletal and rheumatic diseases". The Brussels Declaration is a document supported by all EU parliamentarians, and it guarantees the rights of patients and the role of all institutions in all EU states.

The platform for developement has five lead points for five problems that patients in our country face: The introduction describes the disease, indicating the situation in the Republic of Macedonia and the situation in the European Union. Then comes the diagnosis, which offers solutions for early diagnosis which allows early onset of treatment. Third point is the treatment, where there is a proposal solutions that will greatly assist the publication of protocols. Very important points in this platform are about rehabilitation and social rights of patients. We must not allow discrimination and we should make all efforts for patients to remain actively involved in society. Patients deserve quality and long life.

"Brussels Declaration", however was created because in Europe there are 120 million cases of rheumatic and musculoskeletal diseases and annually European countries spend 240 billion euros due to socio-economic costs, long absence from work, early retirement and benefits due disability. Also patients face discriminatory policies and their participation in society is limited. The six recommendations of the Brussels Declaration suggest that the EU should recognize the importance and gain insight into the problems that patients face every day; to give priority to research that will help improve health conditions; to ensure full inclusion in society and optimize the environment, (flexible working environment) etc. All recommendations for treatment should be based on evidence and it is certainly important for patients to be involved in all decisions concerning them, because patients are exactly those who know best.

On June 17th in Macedonia, a European delegation arrives - EULAR (European League against rheumatism). With their help we will start the campaign for the implementation of the Brussels Declaration in R. Macedonia. First in Europe we start this campaign and we are grateful to have the support of our members, the media, the Macedonian health care institutions, EULAR, Pharmacies.

All of these joint activities will contribute for this very widespread disease to be brought under control in our country with the use of modern guidelines for treatment and thus enable the improvement of quality of life for patients.

Meeting in NORA (Non - governmental Organization for Rheumatism and Arthritis) with Deputy Minister of Health - Prof. D-r Vladimir Popovski and Director of the Health Fund of RM - Ms. Maja Paranardzhieva Zmejkova

Due to the recent positive changes in the field of rheumatology and Rheumatology Clinic in Skopje, we (NORA) held a meeting with Deputy Minister of Health - Prof. D - r Vladimir Popovski, Director of the Fund for Health of RM - Ms. Maja Paranardzhieva Zmejkova.

On May 19, Thursday at 12.00 am, Director of the Health Fund - Ms. Maja Paranardzhieva Zmejkova and Deputy Minister of Health - Prof. D - r Vladimir Popovski visited the office of NORA. The purpose of this visit was to discuss the positive developments in the field of rheumatology and to continue the fruitful cooperation for the good of the patients.

What matters most now for rheumatology patients is that the budget of the Clinic for Rheumatology has increased by 50% which can be treated more severely ill 70 patients with biological therapy. For successful treatment of patients The Health Fund will publish the guidelines for treatment in the Law Journal, in which case they will be legalized. The guidelines for treatment are currently in the process of approval by an international institution.

With further cooperation we will present the "Platform for the development of rheumatology in Macedonia" as part of the launch of the campaign for the implementation of the" Brussels Declaration on muskuloskeletal and rheumatic diseases". The campaign for the implementation of the "Brussels Declaration", will begin with a visit from European Delegation, EULAR (European league against rheumatism and arthritis), where NORA is a member since 2009.

"I am honored in such a nice day to have such a positive informative meeting. We found solutions for many things for which we have fought in the past three years. The first is the introduction of the guidelines for treatment of rheumatoid atritis that, as promised by the Health Fund, will come out in the Law Journal next week. This will cover all patients, the first-stage diagnosis and the ultimate therapeutic treatment. The second is the "National Platform" on the rights of patients, rehabilitation, proper diagnosis and the third is that our association will publish a platform for the development of rheumatology in Macedonia. We will not allow discrimination. Now the most severely ill patients are receiving biological therapy, further the number of patients who will be on biological therapy will increase gradually. For us as NORA it is very important that the time comes to launch the campaign for the introduction of the "Brussels Declaration", which will actually be improving of the conditions and rights of patients. The arrival of the European delegation from EULAR is a step forward and it unites forces for a better exchange of information and also creates better living conditions for patients"- said Dragan Chichikj, President of NORA.

"I would like to praise the efforts of NORA in the battle for improvement of health services. NORA first identifies the problems and then defines steps that can be further supported and realized. Draft guidelines for treatment for treating patients with rheumatic diseases are currently given for an international approval, soon they are going to be published in the Law Journal of the Republic of Macedonia, in which case they will be legalized. The guidelines for treatment exemplify the standard of work and it's really important for patients. Also, with the budget allocation to all health facilities, The Health Fund on April the 1st, increased the budget of the clinic by 50 percent, respectively from 45 to 65 million denars as an opportunity to increase health services in Macedonia "- said Parnardzieva - Zmejkova, director of the national health fund.

"Thanks to NORA initiative, efforts are made in order to finalize the guidelines for treatment which will facilitate the determination of therapy for patients. Until now rheumatology guidelines for treatment were not adopted, this is a step forward and evidence that the rights of patients to modern therapy, based on evidence, will be guaranteed. The increase of the budget of the Clinic of Rheumatology for 50% is a significant step forward in ensuring the availability of biological therapy. And the moment of arrival of the European delegation of EULAR for us is just an incentive for proper organization in the European approach of treating patients. I am a part of the coordinating body for the promotion of rheumatology in Macedonia together with NORA and the Ministry of Health. All of these joint activities will contribute this very widespread disease to be brought under control in our country following modern guidelines for treatment and thus enable the improvement of quality of life for these patients" - said Prof. D- r Popovski.

The main message of NORA, is that the impact of these chronic diseases is enormous and growing, more than 120 million people in Europe suffer from rheumatic and muskulnoskeletal diseases and the budget of the EU countries spends 240 billion euros annually because of disability, early retirements, hospital costs and costs for drugs.

Recommendations adopted at the Conference in 2010 are formulated in the "Brussels Declaration", which is to be implemented in member states of Europe to improve the situation as regards to muskulnoskeletal and rheumatic diseases. To solve the problems that brings rheumatic diseases, NORA along with EULAR, will be the first in Europe to begin a national campaign for the implementation of the "Brussels Declaration".

EULAR IS COMING FOR A VISIT TO MACEDONIA

EULAR is coming for a visit to Macedonia. Their purpose is to review our health care system, concentrating in the field of rheumatology. Their presence should help in promoting and developing the field of rheumatology in Macedonia and the start of the campaign for the introduction of the Brussels Declaration.

From 15 to June 19 this year, senior representatives from EULAR will be in Macedonia. On that occasion will occur various meetings and lectures about which we’ll inform you timely.

Newsletter No.4 and second General Assembly of NGOs NORA

Dear friends and members of NORA,

It is a great honor to address you through our fourth newsletter, and first in color, which we call Mars, just because Mars is the 4th planet from the Sun. Also, by analogy to our solar system, we feel that we exactly got there and NORA is only halfway of the goals we outlined at its inception.

With this newsletter, in particular, we have the honor to invite you to the second General Assembly (GA) of NORA. The General Assembly is the most important organ of our organization. It is a place where members gather, discuss, share experiences, offer activities and projects, vote and simply belong and make friends.

At this Assembly we will have many discussions, proposals, projects and other elements important for the future of NORA, where your, and voice and opinion of any of its members are necessary and essential.

The General Assembly will be held on March 26th (Saturday) at 11 o'clock in hall meetings "Dare Dzambaz in Skopje (vs. PRO, near the Red Cross and the City Hospital in Skopje).

In this newsletter we will briefly introduce several topics that we’ll discuss at the meeting, but will mention some important activities that have been conducted in 2010.

Above all, it is important to mention the success achieved by placing the drug Arava (one of the essential drugs for RA) on the positive list of medicines. Credit for this takes the Health Fund of R. Macedonia and the firm that produces it. If you use this drug you will no longer need to travel to Skopje to obtain the drug, now you can buy it at almost any pharmacy in your town. Because of the specifications of the drug, you still cannot find it in the pharmacy if you have previously don’t order it. Everything you need is to simply tell the employees at the pharmacy that you want them to order it. You are not paying in full for the drug anymore, thereby you avoid problems with the reimbursement of funds, but you simply pay only pay co-payments. Remember, the drug can only be prescribed by your rheumatologist and while using it, it’s necessary to be constantly monitored by your doctor.

Surely many of you have followed our regular media appeals and debates. In all these appeals to the citizens and institutions in health, certainly one of the most important topics was the chronic shortage of so-called BIOLOGICAL DRUGS. These drugs are necessary for the most serious patients, are modern and very specific drugs, but fortunately it is a small group of citizens that are necessary. Therefore GA will devote time to explain biological therapies, which will try to defeat the prejudices about them, and answer all your questions.

NORA also proves itself in international plan. In November 2010 in Berlin, NORA as a member of the Coalition of Associations for Rheumatology EU - EULAR participated in their annual gathering. On this occasion there was competition between 30 EU organizations that competed for best accomplished campaign for the World Day of arthritis, forwarded a performance, an idea and logo. NORA won first place!

NORA celebrated World arthritis day, 12th October, 2010, in the City Park in Skopje. We had support from significant number of members that were persistent and attended despite the poor weather conditions. The event had the opportunity to send postcards with themed help message to all institutions of health. Postcards meant to remind the relevant institutions that we're here, we are here to stay and we seek support in solving our problems. Together we sent over 500 postcards. The campaign with postcards was continued by NORA and we sent an additional 200 postcards addressed personally to each of the deputies, and other relevant figures from the Ministry of Health and the Health Insurance Fund.

Finally, as we started, we sincerely expect you to the General Assembly. The Assembly is open to everyone, for all citizens, feel free and invite your close friends even though they are not members of NORA. Of course, if they want, they will have the opportunity to become members there, at the Assembly itself.

Also, the Assembly invited doctors and specialists - rheumatologists, the Minister of Health Mr. Bujar Osmani, Director of the Health Fund of R. Macedonia, Ms. Maja Parnardzhieva, and other relevant personalities in the field of healthcare.

Many journalists in the field of healthcare are invited too; we will have the opportunity to meet and share our experiences with them and through them with the public. We will use this opportunity to thank this group of journalists. They are great and loyal supporters who follow NORA from the very beginning.

Thank you for your support and your trust. I believe in the mission and goals of NORA, I believe in you, without you they are impossible, I hope to see you at the General Assembly.

Yours,

Dragan Chichikj,

President of NGO NORA

Celebration of World Arthritis Day

Dear friends,

After long and exciting preparations we are honored to invite you to celebrate "World Arthritis Day" under the motto "Rheumatoid arthritis is a disease you can defeat"!

The day will be mark with a very exciting and interesting program. The event will be run by Zarko Dimitrioski and later expect more fun ... music by DJ from Metropolis radio.

All visitors will be able to send a postcard in the name of "World Arthritis Day" through the giant postal box.

For the first visitors we plan to give out themed T-shirts for free, and surely all of you will like the info counter with information about NORA and "World Arthritis Day."

And of course as you can see in the video, we prepared air sensational surprise.

The event is organized for all citizens, for you. Your support is indispensable and needed for all fellow citizens who suffer from rheumatoid arthritis.

See you at the Shell, City Park in Skopje, on Monday, 11th October at 12.00 h.

Nora and Zhare Dimitrioski – Interview in 1E magazine

The current number of 1E magazine is in the store now and you can read an interview with Dragan Chichikj and Zhare Dimitrioski.

The number is current until Tuesday 18 May.

In this number you can also see the latest photo shoot of our member Kristina Arnaudova.

A lot of thanks to Zare for his enthusiasm, and of course to the editorial 1E magazine.

We hope you’ll like it.

National Project 2010 - Mr. DAS ZERO

The application for the project at national level Mr. DAS ZERO is in process. The project provides educational workshops for patients for rheumatic disease and rheumatoid arthritis, and educational workshops for family doctors.

For more information visit the part "projects” on our web site.

The introduction is the most important part of the project, which describes the basic purpose and reason for its preparation. We hope to justify the need for its performance and that you’ll be inspired and motivate to visit the planned workshops.

NGO NORA as a part of the Coalition of non government organizations in health
Nora is a member of the Coalition of non government organizations in health.

Organization of citizens in such a coalition was one of the priorities of NORA since its inception. It does not depend on what kind of disease and health problems face our fellow citizens, friends and colleagues, our understanding is that we all together need to contribute to improving the health system.

With the formation of this coalition all members has successfully proved this. Any organization in the coalition faces with very similar, sometimes quite the same challenges.

We believe that NORA will be an active member of the coalition and will contribute to the popularization and solving the problems of our citizens.