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PAL Award – Patient Advocacy Leadership Award

The Association of Citizens for Rare diseases “Life With Challenges” from Bitola is a winner of the  PAL (Patient Advocacy Leadership).  As winner of this award are 8 more organization from the world.

The PAL Award recognizes patient advocacy organizations for extraordinary work and innovation in helping to raise awareness of lysosomal storage disorders (LSDs), a family of rare diseases that often affect only a small number of people around the world. LSDs typically cause progressive and debilitating health problems (

Fifty patient organizations from around the world applied for 2012 PAL Awards by submitting proposals for innovative campaigns and projects to support the LSD patient community.

Proposals were submitted from organizations that represent people affected by Gaucher disease, MPS disorders, Fabry disease, Pompe disease and Niemann-Pick disease, among other rare diseases. Applicants came from six continents, and 2012 winners were recognized in Chile, France, Hong Kong, Macedonia, Poland, Thailand, United Kingdom and the United States.

“For 3 years, “Life With Challenges” has been working to help people learn about and cope with Gaucher and other rare diseases. The PAL Award will help us to continue to build on these important efforts in the years ahead. We are very excited about the opportunity to expand our work and our impact through this important honor,” said Vesna Aleksovska, President of “Life With Challenges”.

According to the Global Genes Project, an estimated 350 million people worldwide are affected by rare disease. Only five percent of rare diseases currently have approved treatments and more than 50 percent of rare diseases do not have foundations, advocacy groups or organized community support to help expand awareness and improve access to care.
“The organizations that were selected to receive PAL Awards for 2012 showed a remarkable level of innovation and dedication in helping others to learn about and cope with lysosomal storage disorders. Genzyme is honored and very pleased to be able to support the work of “Life With Challenges” through the PAL Award program this year,” said Vulnet Ferrati, Genzyme representative from Macedonia.


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.

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