A volunteer of LIFE WITH CHALLENGES Gordana Loleska, in cooperation with companies and organizatins from Ohrid managed to organize teams who run in support of people with rare diseases in the event Ohrid Running.
This was a promotional event with a main goal to support running, sport, quality of life and healthy life.
Statement Gordana Loleska, member of LIFE WITH CHALLENGES
„For the children with rare diseases and special needs on this event we had professionals but also parents and patients involved. The citiznes also supported our idea for raising public awareness on rare diseases. People with rare diseases deserve better quality of life, they deserve a chance to do most with what they have. Everyone can be successful if he has a chance to do so.“
Statement Vesna Aleksovska, president of LIFE WITH CHALLENGESИ
„Gordana is one of our most active members, she organizes many events in Ohrid and we are proud of her. This is just one more event showing support for people facing life with a rare disease. We need to remember that there are many social and health services needed to support families with rare diseases.
After the register for rare diseases started in 2015, there are around 450 patients registered and around 40 basic diagnosis (70 different). With the new financing of the program for rare diseases at the Ministry of Health, now there are around 29 medicines for 15 around 15 different diagnosis in Macedonia. There is a need for more medicines for different diagnosis. If there is a drug, patients need to have it so they can have hope for life. We expect that medicines will be covered soon for FAP, Spinal Muscular Atrophy, Muscular Dystrophy – Duchene, Myelodisplastic Syndrome – MDS, Acute Myeloid Leukemia, Pulmonary Fibrosis and others. We also ask for social services such as personal assistants for ALS patients and other patients with severe physical invalidity. We are still waiting on the Health Insurance Fund to approve refunding for special bandages and plasters for Epidermolisis Bulossa and other things that patients need.
We hope that the new Ministers of Health and Social Policy and Labor will find a way to make the Program for Rare diseases better. Institutions need to work together to make life easier on families with rare diseases.“
The event was supported by:
Tamaro Markets, Youth Club Red Cross Ohrid, NGO Option Ohrid, Cuba Libre IOhrid, Poposki Ordination Ohrid, Ohrid Super star talent show