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May, 8th 2015

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April, 24rd 2015

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We are in Ireland with other delegates from all around Europe, on this year's EULAR #pare2015 conference. Watch the live stream of the opening session and other sessions too, on this link http://www.eular.org/social_media_01.cfm


April, 03rd 2015

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March, 13th 2015

NORA lends the educational and informative boards

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Dear friends and supporters, 

Being a Civil Society Organization, and after the successful lunching of the campaign for lending our facilities, again we would like to show support in the sector in which we work.
 
To all of the CSOs that work in the field of health, we are lending the 9 educational boards, that we have nstalled in Public Health Institutions, in 6 cities around the country. Namely in Skopje, Bitola, Kumanovo, Strumica, Prilep and Stip. We've installed this network of educational boards in 2012/2013, and the general public showed grate interest in the availability of printed materials on the subject of rheumatology. That is why we would like to approach the CSOs that work in the sphere of health and that have printed materials aimed to educate the public, to disseminate them through our network of educational boards. All you need to do is to send us an electronic request on our email office@nora.mk. Afterwards we will contact you for officializing the collaboration.
 
It is very important to note that in return NORA doesn't ask for any financial benefits. Our only goal is to show solidarity and support in the civil sector, but more importantly our main goal is education of citizens and prevention of diseases/medical conditions. 
 
Sincerely,
NORA's team

March, 11th 2015

Today we celebrate NORA's 7th birthday!

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March, 8th 2015

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February, 19th 2015

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Because NORA is part of the National Alliance for RARE disease of R.Macedonia and taking into consideration that we represent 13 diagnoses which fall in the category of rare diseases, we will celebrate the international Rare Disease Day. Join us and show support to those who need it the most!

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February, 18th 2015

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Dear friends and supporters. We are glad to announce that NORA has become a member of the American Chamber of Commerce in Macedonia. We believe that this membership will contribute to many collaborations that will have a strong impact of the well being of patients with rheumatological diseases in Macedonia.

http://amcham.com.mk/membership/membership-links/


February, 17th 2015

 

Read the Report for the 17th EULAR Annual European Conference of PARE and be informed for the latest achievements in the field of rheumatology

 

Access the Report from this link, or klick on the photo below.

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February, 13th 2015

One unusual campaign against Rheumatoid Arhtritis

 Source 

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Rheumatoid arthritis is autoimmune disease that causes chronic inflammation of the joints. Although people do not talk much about this disease, more than 60 000 Bulgarians suffer from it. The symptoms are stiffness, swelling and joint pain, and sometimes worsen and lead to permanent joint damage and disability. 

 
In order to raise awareness of the problems of people with such diagnose, the "Association of patients with rheumatoid arthritis" and the "Organization of patients with rheumatic diseases in Bulgaria " launched in Varna the campaign: "Small things are very important." This campaign will focus on the severity of rheumatic diseases and the importance of early diagnosis. 
 
During the press conference, held on 2 February - World Day to combat rheumatoid arthritis - some of the most experienced practitioners in the field were in support of the initiative. 
 
Prof. Dr. Radoslav Radev approached the public with the campaign slogan "Small things are very important": "The dynamic of  our everyday lives, do not let us to pay attention to small things". The purpose of this campaign, the purpose of the Association, the purpose of the University, the University Hospital and the Ministry of Health is exactly this, to show that these diseases are not a naive thing. They are severe, lead to disability, suffering and they interrupt the normal lifespan of each patient. 
 
Dr. Vanya Sharkov - Deputy Minister of Health - said: "I think today, the most important thing is not to recognize this activity (the campaign). The idea of the campaign is much more than just to say that people have problems in their daily lives, it makes us turn to humanity in ourselves, and to see and recognize what happens to people who suffer from rheumatic diseases and to be more tolerate. I believe that the Ministry of Health is prepared and dedicated to work hand in hand with patient organizations in the name of achieving a better life for people who suffer from this disease". 
 
Assoc. Prof. Vladimir Kadinov - Head of the department of Rheumatology at the University Hospital "St. Marina" thinks that it is a "criminal in the 21st century, when there are available innovative treatments for rheumatoid arthritis, for patients to get disability and to suffer from constant pain. If the disease is early diagnosed, the prognosis is very optimistic. Today there are many modern and adequate treatments that help put the disease under control, and that allow a remission to occur. There are many people with rheumatoid arthritis who live with swollen fingers, constant pain and believe that this is because of their age. Actually, rheumatoid arthritis mostly affect people of working age. Women are more likely to be affected by RA, at the age between 35 and 55 years. People suffer from pain, and they constantly circulate through the health system, going from one specialist to another, in stead of going directly to the rheumatologist and get an early and correct diagnose. 
 
One of the goals of the campaign is to provoke public interest and to draw attention to the severity of the arthritis diseases. Therefore in Varna three huge sculptures have been established - the spoon, shoelaces and woman's high heal shoe. These everyday objects symbolize the actions that people with rheumatic diseases would never be able to do. "Not many of us think about how it feels if you are not able to tie your sneakers, because your spine is stiff from the ankylosing spondylitis, or how it feels like for women to never be able to wear high-heels, or what it means if you are not able any more to eat with a spoon, because your joints are bent. All these feelings are part of everyday life for people with rheumatic diseases. To patients with rheumatic diseases I would recommend them that the better educated they are about arthritis and the more positive attitude they have, the more successful results their treatment will bring."- Said Cheglayska Rose, President of the "Association of patients with rheumatoid arthritis". 
 
The sculpture of the spoon is located in the Sea Garden, the one of the shoe in "St. Marina" and that of the shoelaces in the yard of the Medical University. The sculptures will remain exposed for one month to allow more people to see them and get involved in the campaign, which will simultaneously run on the Facebook page "Hug with soul". 
 
Rheumatic diseases are articular and affect other systems in the body. But in general, people suffer from rheumatic diseases that are mostly manifested as inflammatory joint diseases such as: rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis, and others. 
 
These diseases mostly affect people in their most productive age age, and it influences their quality of life and can often lead to disability. The reason for their development is unknown and there is no treatment for patients to heal completely. 
 
Rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis are diseases that in addition of the articular manifestation, there may be systemic manifestations too such as: damage to the eyes, skin, lungs, heart, blood vessels, kidneys etc. According to an unofficial data, in Bulgaria there are approximately 60.000 people with RA, 30-40 thousand with PsA and around 20.000 with ankylosing spondylitis.

February, 12th 2015

 

 
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What do you think, who are the faces of arthritis? Klik at the photo to see the video and get the real picture. Share, so that many can know the truth behind arthritis!

February, 4th 2015

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The 2015 donating calendar has been published in the magazine TEA Moderna. We would like to thank the CSO Konekt, for dedicating March to NORA and to patients with rheumatological diseases.  Be humane and donate. 

These are our bank information so that you can proceed the donation: 
 
Account owner
Zdruzenie NORA Skopje
ID #
TAX #
6317510
4030008017477
Bank
NLB Tutunska Banka
Account #
210063175100198
Currency account #
МК07210722000043232

 


February, 2nd 2015

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January, 17th 2015

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NORA lends its facilities

 
Dear friends and supporters. Taking into consideration the financial situation in which the civil sector faces, we are glad to inform you that as a CSO we want to be of help to other CSOs, Foundations, formal and informal citizen groups etc., who are not able to provide to have their own facilities where they can conduct meetings, workshops and other activities. 
 
What we can provide for you is the usage of one of our offices (during the working days and hours), so that you can conduct your activities. Every party that wants to use our office will have to fill this form Барање, at least 5 days prior to the wanted date, and send it to us via our email at office@nora.mk. After we will get your form, we will inform you if that particular day and time is available. We use these facilities on a daily basis and we will be able to lend them to you solely if we don’t have planned activities of our on. Therefore we recommend you to read the Rules of procedure Правилникот where the conditions for usage have been stipulated.
 
The office that we are going to lend has 17 seats and a conference table that can easily be transformed for maximum usage of the space. We also have a WiFi and a computer that you can use in order to attach additional equipment. Our premises are approachable for people that use clutches, wheelchairs etc. (there is a ramp in front of the building and an elevator to the facilities).   
Additionally it is important to note that in return we do not want any financial benefits. Even though financially we are a humble and small organization, we only want to express our support and solidarity to the civil sector. 
 
Sincerely,
NORA’s team

January, 15th 2015

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Dear Friends,

Have a look at how your support looks like in membership applications. This is how more than 1100 membership applications looks like! This is how folders overfilled with membership applications looks like, when people get united in a simple but noble vision and mission! BRAVO FOR ALL NORA MEMBERS! Is there a bigger inspiration and motivation than this?!

More photos on our fb fun page НОРА НВО | NGO NORA.


January, 14th 2015

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For all of you that haven't visited our office we recommend you to do so. In the meantime take a look at how our work and work space look like. 
 
You can find more photographs from our work space on this link.

January, 14th 2015

 Our view regarding the Draft-bill on complementary and alternative medicine


Even though the citizens of RM do not have access to the basic medical treatments that are essential for treating rheumatological and musculoskeletal diseases which are often autoimmune and chronic diseases (basic DMARDs that the patients buy abroad, or are registered in RM but are not on the positive list of drugs which means that patients buy them on their own expense, regardless of their health insurance; also the innovative biological therapies that in some cases are even essential and considered to be the basic therapy so that these diseases can be under control i.e. in remission etc.), the Ministry of Health has decided to focus on the field of complementary and alternative medicine that is not part of the health care services i.e. not in compliance with evidence based medicine! These are the “priorities” in our health care system and driven by this agenda the Assembly of RM on its session held January, 1st 2015, concluded that the Draft-bill on complementary and alternative medicine is acceptable and can be subject to further reading.

No one denies that the disciplines which are subject to the Draft-bill are not useful, beneficial etc., but having in mind that there are much more important segments of our health care system that are still not functioning; the fact that the health care conditions are with minimum standards; the fact that our Hospitals and Health Providing Institutions are with a decaying infrastructure thus the citizens of RM prefer to be treated abroad regardless of the fact that they are paying the health insurance tax; the fact that essential medical therapies are not provided in many health branches including rheumatology; the fact that we are so much behind not just from the west, but from the region too… Thus, we believe that focusing on these challenges and on evidence based medicine should be our priority, not the complementary and alternative medicine!

You can find more information regarding the Bill on this link.


January, 8th 2015 

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More information on the following link.

December, 24th 2014

NORA's team wishes you a Marry Christmas and a Happy New Year

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December, 19th 2014

Why is it important to become a NORA member?

 
As our member you will be informed about the ongoing activities of NORA and about the field of Rheumatology in Macedonia and the world. We will inform you about the types of therapies, treatment, exercise and everything else which is connected with rheumatological and musculo-skeletal diseases (RMDs).
 
Every NORA member gets our yearly Newsletter, where we write about regarding all the current and future activities which are important for the work of the organization. We send to our members all of our latest printed materials as brochures and other types of printed materials via mail. Our members are regularly invited to attend workshops on different subjects which are very important for them and their health. We also invite them to be part of different types of meetings or public events.
 
Besides all of this, our members have the chance to become part of the General Assembly, where they get directly involved in NORA’s work, they vote and make decisions for future projects and different types of activities, and if they express interest, they have the opportunity to elect and be elected as members of NORA’s Executive Board and for other working positions within the organization.
 
Alongside all of these benefits, probably the most important one is, that with every new person that becomes a member of our organization, gains support and growth. Every new member expresses their citizen consciousness and his/hers support for NORA’s work. As a Civil Society Organization (CSO), this gives us a greater voice and motivation for future negotiations with the state institutions! With every new member, NORA becomes a stronger and more influential CSO, thus more successful in getting better treatment conditions for patients with RMDs!

 
November, 7th 2014
 

Early Report from the Opening Session of the 17th EULAR Pare Conference
7-9th November, Zagreb

 
Dear friends I am happy to report to you live from Zagreb, from the 17th EULAR Pare Conference - the Association of patient organizations for rheumatological diseases from Europe. Today, on the 7th of November (10 o'clock) there are representatives from 33 European countries on the Conference.

The opening of the Conference just ended where Ms. Tatjana Trupec from the Croatian National health fund held her opening speech. I approached her afterwards to ask her several questions that will help us make a parallel between Croatia and Macedonia.

Prior to the Conference I made a small research on comparing Croatia and Macedonia especially on an economic level because I am aware that the health budget greatly depends on the country's economy (the following information are from Wikipedia and the numbers are expressed in USD).

1. Croatia has 4.2 million inhabitants (census from 2011) and Macedonia has 2.01 million inhabitants (approximately)
2. Croatia has 61 billion GDP and Macedonia has 10 billion GDP
3. Croatia has 14.000 USD GDP per capita and Macedonia has 4.900 USD GDP per capita

I approached Ms. Trupec to ask her if these numbers are also reflected in their rheumatology meaning if Croatia has 6 times greater GDP than Macedonia, does it have 6 times greater health budget than us? Her answer surprised me.

First she noted that the Croatian Government allocates 17% from the National budget to the health budget which is almost 7% of their GDP or in terms of money 3 billion euros. She then noted that on a national level they are aware of the magnitude of the RMDs and the fact that they are a significant problem in the whole society and that RMDs are the number one cause of disability. That is why RMDs are on the top of their agenda and they allocate 15% of the total health budget in the field of rheumatology and for preventing disabilities. Meaning they allocate 1/2 billion euros (precisely 450 million euros!). Out of this budget 11 million euros are allocated solely for biological therapies and Ms. Trupec proudly says that currently they have 8 different biological therapies which are available in Croatia. They plan to expand the list in 2015 so that they can have at least 10-11 biological therapies.

In comparison with Macedonia, we have only 1 biological therapy which is given roughly to 100 patients meaning only 600.000 euros are being allocated for biological therapies which is 20 times less than Croatia. If their GDP is 6 times greater than our's than our rheumatology is 14 times unprivileged than Croatia's. I believe that if we even look at rheumatology as a whole, these numbers will also be reflected. As a conclusion, I believe that our institutions should look at this parallel in depth and they should also allocate time and resources in the field of rheumatology. It is not a coincidence that Croatia and other countries have done so... because the rheumatological problems directly affect the national economy and the country's development and it influence's people's well being and their happiness.

Ms. Trupec personally knows Ms. Maja Parnandzieva (and she asked me to send her regards). She told me that she is aware of our situation and she noted that even though the economic conditions are as such, it can always be done more.

Dragan Chichikj and NORA's team from Zagreb
 
- - - - - - - - - -
For all of you that missed the opening session of this year's 17th EULAR Annual European Conference of Pare #pare2014, you can still see the session on the following link. This year's main subject is "Healthy ageing with a rheumatic or musculoskeletal disease (RMD)"
 

November, 6th 2014
 
 
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We are counting down until the 17th EULAR ANNUAL EUROPEAN CONFERENCE OF PARE. This year's main subject is ‘Healthy Ageing with a rheumatic or musculoskeletal disease (RMD)’.Watch the Opening session on the 7 November at 11.20am CET on the following link (the Conference is schedguled from the 7th untill the 9th of November)
 

November, 1st 2014

The Edgar Stene contest 2015

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NORA as a member of EULAR – the European League Against Rheumatism, is glad to inform you that this year, again, we support the essay contest for the Edgar Stene Prize, the contest that is provided by EULAR. This year’s topic for the essays is: “Taking control of my life: working together with health professionals to achieve my personal goals”.

 
We invite people with rheumatic and musculoskeletal diseases (RMDs) to write about their personal experiences  In this context, health professionals may include your nurse, your primary care doctor, your rheumatologist and other specialists, your physiotherapist, your psychologist - in brief any of the health care team around you. We would also like to hear what could be improved in your country and if you have access to all the health professionals you need. What should an ideal relationship between health professionals and people with RMDs look like? 
 
To read about the official launching of the contest and additional information, just follow this link.
 
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The rules for participation in the contest are the following:
- You must be a patient with a RMD and to have minimum 16 years of age
- The essay must not be longer than two A4 pages
- The essay must be written via computer, in the mother language (Macedonian), in the Fond Ariel 12 - single line space, adequate frames
- To be send to us, as a Word document, on our email office@nora.mk
 
The deadline for submission of the essays is the 31st December, 2014. The lucky winner will get 2.000 € as an award and plus he/she will have the opportunity to participate on next year’s European Congress of Rheumatology, which will be held in Rome, from the 10th – 13th June, 2015.
 
We wish you luck!  

October, 12th 2014
 
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We are proud to announce that  Pavlina Zlatko Pejkovski is the Global Winner of this years competition Vision 2043. Her vision ‘A greater sense of cohesion between patients, their families and doctors’ got the majority of the votes on a European level. We would like to thank World Arthritis Day because they continuously provide us with different ways in which patients can get involved in raising awareness for RMDs.
Again we would like to congratulate Pavlina for the award. We would like her success to be a motivation for other patients in Macedonia for their future participation in Eular - European League Against Rheumatism's contests.
 

October, 12th 2014
 
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The news for this year's celebration of the World Arthritis Day has been covered by the media for three days. We would like to thank our national media: MИА.mk Plusinfo.mk Net Press Alfa Televizija Sitel Tv A1on.mk Kanal 5 TV MaximНова Македонија IDIVIDI Press24.mk and all the other that have covered our story. Undoubtedly NORA's success has been great because of the support that we have from the media. We would also like to thank the whole team of the National Fund for Insurance in Macedonia (Фонд за здравствено осигурување на Македонија) and for their continuous support that gives us success when advocating for patients with RMDs. For all the patients that suffer from some sort of arthritis we would like to send a message: You are not alone. NORA and her supporters stand behind you. We are the once that fight for your rights. This is the greatest and most proper way to celebrate the WAD.

October, 10th 2014
 
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Great gratitude to the team of  Почувствувај ја Македонија со шестото сетило - срцето for their continuous support and unconditional humanity. The next event is in Струмица - Поетски караван - Почувствувај ја Македонија, on the WAD - 12th of October. This event  will be dedicated to NORA and all the patients with RMDs. There are not enough words to express our gratitude!

October, 10th 2014
 
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We've celebrated this year's WAD
 
 
Press release
Skopje, 10.10.2014


First literature in Macedonian language for patient education on medicines in Rheumatology! 
 
NORA - Nongovernmental Organization for Rheumatism and Arthritis today celebrated the World Arthritis Day - 12th of October (WAD). WAD is one of the most important days for patients with RMDs and it is celebrated throughout the world. By doing this we raise awareness for RMDs and we give support to people who suffer from RMDs.

This year NORA, again, successfully celebrated WAD under the slogan "My message to Arthritis". In the presence of patients, citizens, the institutions, the pharmacological companies and the media, NORA announced it's next revolutionary project. The last research that NORA conducted showed that education regarding the therapies and types of treatment for RMDs is necessary for the patients, and they would like to have additional information on these subjects.  

NORA will continue to answer the needs of the patients thus it will produce the FIRST educative handbook on the medicines used in RMDs.

Patients have minimal knowledge regarding the medicines that are used in RMDs and they have difficulty when it comes to following protocols and directions from rheumatologists. Because they are uninformed on how the medicines work, patients have doubts in the available treatments, resentment and fear, that often results in to patients stopping their therapy. Therefore, NORA will publish the pocket handbook for different groups of medicines and treatments in RMDs, written on a language which is understandable for patients. With this project we will encourage patients and boost their confidence in the therapies so that they can be more successfully treated.

"We expect that project of this magnitude that directly answer the needs of the patients, will be supported by the pharmaceutical companies, health professionals, the institutions from the area of health and every concerned party" - said Suzana Bozarova, Vice President of NORA.  

"We continue to fulfill NORA's mission - "Life without pain" – added Suzana.
 
Х Х Х Х 
 
Part of the atmosphere of this year's WAD can be seen on the following link. We would like to thank all NORA's members and everyone that was present at the event, especially Ms. Maja Parnandzieva - Director of the National Health Fund of Republic of Macedonia, as well as the Clinic of rheumatology who also took part in the event and shared their messages to arthritis. Enjoy the photographs and feel the atmosphere.
 
Sincerely,
NORA's team


 

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