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Press – media announcements

Press from 29.02.2012 – Rare disease day – press conference

Daily newspapers

  5. Focus – on line link not available

National televisions

  3. News at 18.30h on Telma-
  4. Sitel – News at 15.00h- on line link not available
  5. Sitel – morning show – 8.30h – on line link not available
  6. Alfa – portik – tv show – 10.00-12.00 h. – on line link not available
  7. Local television from Tetovo – on line link not available

Новинска агенција / News agency


Internet portals


Press information

The government is ignoring 20 patients with rare diseases
With the budget cuts, the hope of the patients is gone!

A 12 year old girl with Gaucher will have to be operated if the Ministry of health does not make an intervene import of the needed medicine. The budget for the program with rare diseases has been cut during the last budget rebalance and there is no budget for treatment of the patients with rare diseases in Macedonia.

Mence Atansasova – Toci

The medicine exists but is not available for the 12 year old A.K. who has Gaucher. She will have to be operated because her condition is getting worse. Her spleen is enormously enlarged and her liver also. That is why the spleen has to be removed. But if she starts enzyme replacement therapy as soon as possible, she won’t need the operation. The girl was diagnosed 6 month ago and the parents noticed the signs when her abdomen was getting bigger because of the enlargement of the spleen and liver. The necessary therapy should be provided by the Ministry of Health. Her family is desperate, trying to provide the needed medicine. They contacted the Ministry but there is still no answer.

– My daughter has constant pain in her abdomen. The liver and the spleen are enlarged and she has to start treatment immediately. Otherwise her spleen has to be removed and that is not good. – says her father Shani K.

The medicine is expensive and it is not available in Macedonia. The company that produces the medicine is ready to provide the first 50 units of the medicine and they will wait for payment for a year if needed (if the government is not able to pay sooner). The association “Life with Challenges” is negotiating with the Ministry of Health to provide the needed medicine and save the life of the girl.

– We hope that the Ministry of Health will bring the right decision – providing the needed medicine. It is about saving human lives that we are talking and we need long-term solution for the patients with rare diseases in R. Macedonia. – says Vesna Stojmirova, the chairman of the association.

The newspaper “Den” asked the Ministry of Health for an answer about the pending issues regarding the condition of the patients with rare diseases, but there was no answer from the Ministry. It is still not known if the girl will have a normal life or a life with lower quality and psychical and physical obstacles.

In Macedonia there are around 20 patients with rare diseases and most of them are children. In the program for rare diseases it is stated that 1 million Euros will be provided for the treatment of these patients. With the last rebalance of the budget this program was ignored and with the budget cuts, the hope of the patients is lost. From the association “Life with Challenges” they say that through the program only 2 children with the rare disease – mucopolysaharidosis are treated and all the other patients are left without therapy.

The doctors say that if these patients are treated they can have normal lives. Without treatment they are facing serious health problems and most of them die at young age. The treatment for these patients will cost approximately 500 000 Euros. The company that produces the medicine for Gaucher is already donating treatment for 5 patients with Gaucher in Macedonia. In the past 4 years they donated around 5 million Euros for treatment and diagnosis. They are committed to treating the patients and that is a huge help for the government in Macedonia.

For raising public awareness about rare diseases in Macedonia, the association “Life with Challenges” will organize a campaign with the resources from the PAL reward (Patient Advocacy Leadership). For the PAL award, 50 countries in the world submitted applications and only 9 of them received the reward. The project “Do not cry fight for your rights!” will be a huge support in the fight for patients’ rights in Macedonia.

Documents for download

Click on the document that you want to download, there are documents in English and Macedonian:

Magazine “Face to Face”, 2015, Rare Disease Day

– licevlice br. 14  In Macedonian language

– Face to Face in English language

Annual report for 2015:

Izvestaj od aktivnosti za 2015

Activity report for 2015

Annual report for 2014:

Activites in 2014 – annual report

Finansiski izvestaj od Centralen registar 2014 – Zivot so predizvici – Financial report from Central register for 2014 – in Macedonian

Brochures from the conferences in March, 2014

Brochure – European regulative and recommendations in the field of rare diseases

Nacionalen plan za retki bolesti – broshura – National plan for rare diseases – Macedonian and English

Brochure from Rare Disease Day – 2014

Брошура – Ден на ретки болести Web – Rare Disease Day 2014 in Macedonian, translated from the rare disease day message and EURORDIS brochure princeps_document-EN

Brochures with patient stories

– Brosura – Prikazni na pacienti – Macedonian Version

– Brochure – Patient Stories – English version / Англиски

Membership Application

–  Пријава за членство – Macedonian, English and Albanian

Informative brochures for rare diseases in Macedonain 

– – Болест на Гоше – Gaucher Disease

– Епидермолисис Булоса – Epydermolysis Bulossa

– Наследна Тирозинемија – Hereditary Tyrosinemia

– Фенилкетонурија – Phenilketonyria

– Хередитарен Ангиоедем – Hereditary Angioedema

– Болеста Помпе – Pompe disease

Laws in R. Macedonia – regarding rare diseases and health

– Програма за лекување на ретки болести во РМ за 2012 година – Македонски



Reports and documents of the association

– Activities of Life with Challenges in 2013 – Annual Report 2013

– Official financial report 2013 from central register

– Life with Challenges – report 2012 – Report for 2012, Англиски

– Godisen izvestaj – Zivot so Predizvici – Rerport 2012, Macedonian version

– Статут на Здружението –  Macedonian version

– Do not cry fight for your rights – presentation at Gaucher  Patient Advisory Meeting at Waterford, Ireland, English

– zavrsna smetka 2011 – 2012 – Financial statement in Macedonian – revenues less than 2500 EUR in 2011 and 2012


Membership is free of charge and voluntary.
Members of the association are the founders, and all members of  the official bodies in the association.
Members of the Association can be Macedonian or foreign citizens, patients with rare diseases, members of families with patients with rare diseases, supporters of the mission, goals and activities of the association.

You can become member in the Association with filling out an application form.
Each members is being informed timely for the activities of the association.

If you want to become our member, please download the application bellow – just click and it will start with download. After you fill it out, send it to, or

– Prijava-za-clenstvo1 / Membership Application

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