About "Life" Association for Rare Diseases in Children
Our association is an umbrella association of patients suffering from various rare diseases, over 50% of which include severe and complex epilepsies that are drug-resistant.
Clinical Features of our Community
Children suffering from these rare diseases very quickly lose all motor functions, which include ataxia, stop walking, loss of vision, loss of swallowing function (they are implanted with a G-tube) and are mostly dependent on the care of another person 24 hours a day.
Our Mission
Association “Life” was founded in 2010. Since then it has been very active in raising awareness about the rare diseases, providing all kind of support to the patients and their families as well as improving the position in society for rare diseases patients and their families. Our goal is to unite the patient community, patient groups and doctors in order to improve the lives and status of patients with rare diseases and their families.
I am Especially Proud of...
From 2020. the internet platform - Rare diseases database has been active as one of the projects of our association (https://retkebolesti.com/sr). The Rare diseases database is a source of translated information (from Orpha.net) for doctors, patients and their family members in Serbian, Macedonian, Croatian and English. In the Balkan region, where countries speak a very similar or the same language, there is a very high language barrier with the English language, both among doctors and among patients.
Excited to REN Because...
We are aware of the fact that our rare disease community needs partners in order to become a strong voice in raising awareness of rare disease issues, providing therapy and medical equipment, as well as improving the position of rare disease sufferers and their families in society.
My Journey and Motivation...
First of all, I am the mother of a girl, Zoya, who lost her battle with Batten's disease 10 years ago when she was only 9 years old, and it was my girl who introduced me to the world of rare diseases. The biggest achievement of our association is certainly the initiative for Zoya's Law (Law on Prevention and Diagnosis of Genetic Diseases, Genetically Conditioned Anomalies and Rare Diseases of the Republic of Serbia), which was unanimously adopted by the Serbian Parliament in 2015 and since then has saved over 4,000 children. Zoya's law is named in her honor.
By Bojana Mirosavljevic, President