ISKRA Association holds first rare disease conference in Novi Pazar

The ISKRA Association held its inaugural conference, titled ‘From Diagnosis to Medicine,’ in Novi Pazar. The event brought together parents of children with rare diseases, medical professionals, and institutional representatives to address challenges ranging from initial diagnosis to accessing therapy and exercising legal rights within the health and social systems.

Muamera Rahić, president of the ISKRA Association, stated that the goal is to draw attention to families living with rare diseases and connect them with necessary expertise and support. The conference highlighted the importance of early symptom recognition and the need for better information regarding treatment options.

Dr. Sabir Sagdati from the Novi Pazar General Hospital discussed acute intermittent porphyria, noting that the hospital has become a leading center for treating this condition in Serbia. He reported that treatments such as hemin arginate and givosiran are now available locally, helping patients avoid acute attacks. Other rare diseases mentioned in the region include cystic fibrosis and transthyretin amyloidosis.