Rare Disease Day- Life with a Rare Disease: Day by Day, Hand in Hand

Respected,

On the occasion of the World Day of Rare Diseases the Association of Citizens with Rare Disease “Life with Challenges”, this time with joint forces of 12 organisations from the National Alliance for Rare Disease in Macedonia (NARDM) organized and event to mark the day with support from the activism platform “Face to Face” which issues a magazine with the same title.

Mrs. Maja Ivanova, First Lady of R. Macedonia and honorary patron of Life with Challenges stated:

“Rarity in the world represents uniqueness and prestige. Rare diseases are also unique, and patients with a rare disease are equally unique and their lives precious. Because every life is equally valuable it is important to have early diagnosis and suitable treatment for rare diseases.

I was priviledged to be  honorary patron of the event orgaised by EURORDIS in Brussels where  together we discussed the support in the area of research, treatment, early diagnosis as well as support for the patients. Rare diseases should be a priority both on European and national level.”

Mrs. Maja Ivanova greeted the patients and their families whose everyday struggle helps to raise the awareness on rare diseases. She urged not to emphasise the differences, but to build a better life together.

Mr. Ognen Janeski, public persona and activist of the platform “Face to Face”stated:

“The 29 stitches on my chest remind me of my struggle and my strength to persevere.” He reminded us how important it is to have and to give strength and support to rare disease patients through Azemina’s example, a girl suffering from the rare disease Gaucher,  who fights the rare disease with a smile. Ognen recounted his personal touching story when as a child he underwent a surgical procedure which saved his life and he emphasized that patients always come first and above all.

Mrs. Vesna Aleksovska, President of Life With Challenges  and NARDM stated:

“Rare diseases are a complex challenge which can only be surpassed with joint collaboration between institutions, patients, families, doctors and the pharmaceutical industry. In R. Macedonia for a very long time only a small part of the rare diseases were addressed (fully or partially) through the Health Insurance Fund. After the adoption of the Rare Disease Programme within the Ministry of Health in 2009 patients suffering from MPS 2 – Hunter Syndrome were taken care of . This year with the new law on excise tax one denar from each packet of cigarettes goes directly into financing the Rare Disease Programme. We are grateful for this measure both as associations and patients and I know that the doctors are grateful as well because they will be able to save more lives. With this change in the financing of the Programme we expect patients who have not been addressed by now by any institution and who struggled individually to receive proper treatment  to finally get the appropriate help. There are around 30 different diseases and the list of these patients is being compiled at the Ministry of Health in cooperation with the associations, patients and doctors. We hope that all patients will receive suitable help with which the families suffering a rare disease will finally get better quality of life. We will continue to work on improving the health and social services for patients and families with rare diseases , knowing that medicines are not the only thing we need, but a multidisciplinary approach which will also provide social help, necessary orthopedic aids and psychological help.”

At the event Certificates of Gratitude were awarded to the following individuals, state institutions and private companies:

1. Mrs. Maja Ivanova, First Lady of R. Macedonia
2. Mr. Nikola Todorov, Minister of Health of R.Macedonia
3. Mr. Momir H. Polenakovik, Macedonian Academy of Sciences and Arts
4. Prof. MD Aspazija Sofijanova
5. Agency for Medicines, R.Macedonia
6. Foundation Open Society Macedonia
7. US Embassy, Macedonia
8. Genzyme –Sanofi Aventis
9. Central European Initiative- CEI
10. Hoffmann-LaRoche
11. Vinary Brzanov
12. Brewery Star Grad
13. Foundation Makedonika
14. ONE
15. VIP
16. Kontura
17. CONCEPT Marketing and Communications
18. ALKALOID KONS Ltd
19. ALKALOID AD Skopje
20. Prof. MD Aco Kostovski
21. Prof.MD Zoran Guchev
22. Prof.MD Vesna Grivchev Panovska
23. Ass.MD Ivan Milev
24. Prof. MD Velibor Tasikj
25. Ass. MD Biljana Chonevska Jovanova
26. Nurses from the hematology ward, University Clinic for Children’s Diseases
27. NaTochak
28. To4ak
29. Red Cross of Municipality Gazi Baba
30. ZPK Korab
31. Natasha Dimitrievska Krivoshev
32. Zoran Mihajlovski
33. Dragan B.Kostikj
34. Valentina Bachvarovska
35.