Association of patients with Von Hippel-Lindau syndrome in Serbia. We inform, connect and advocate for those living with this rare inherited disease, and for their families.
Von Hippel-Lindau syndrome is a rare inherited disease. In Serbia we face challenges of early diagnosis and access to treatment, but progress is being made.
at the UCCS Genetics Laboratory over 20 years
patients at the UCCS Clinic for Endocrinology
Note: A reliable epidemiological estimate of the total number of patients with VHL syndrome in Serbia does not yet exist. Targeted systemic therapy (belzutifan, manufactured by MSD) is currently not available in Serbia - the association is working to advocate for its access.
Source: Clinic for Endocrinology, Diabetes and Metabolic Diseases, UCC of Serbia.
Von Hippel-Lindau (VHL) syndrome is caused by a mutation of the VHL gene, which under normal conditions controls cell growth. It leads to the development of multiple tumors and cysts, most often benign, but with a risk of malignant changes.
Every child of an affected parent has a 50% chance of inheriting the mutation. There is no rule about the age at which symptoms appear; they can occur at any stage of life and differ from patient to patient. That is why early detection and lifelong monitoring are crucial.
Every step we take is directed toward a single goal: a better life for people with VHL syndrome and their families.
We provide verified medical information about diagnosis, treatment and modern therapy, adapted to the Serbian healthcare system.
We bring together patients, families and doctors - through personal stories, support and contacts with referral centers in Serbia and the VHL Europa network.
We advocate for access to modern therapy, a patient registry and better treatment conditions through cooperation with institutions.
„We have only one life, and it would be a shame not to fight for it — to live it as long as one can."
She first noticed symptoms in the ninth month of pregnancy. The diagnosis came only after detailed testing — when more than 30 tumors were found in her body. Years of operations and a fight for life followed, along with learning that her son Dorian has the same disease. Today she leads the association and fights for everyone facing VHL syndrome.
“We run for the rare.” – This was the message that brought together around 800 runners and nearly 2,000 visitors in Sremska Mitrovica on August 8, 2026, for the first humanitarian night half marathon “SIRMIUM 21/7.”
Read more
Sremska Mitrovica is all set to host participants and guests of the First Charity Night Half Marathon on August 8.
Read more
A Unique Sports and Charity Event
Read moreThe association was founded in December 2025 — memberships in international networks and partnerships with pharmaceutical companies are being established.
