Events
1 August 2026
Every kilometer run brings new hope for someone's health.
Sremska Mitrovica is all set to host participants and guests of the First Charity Night Half Marathon on August 8.
Read moreRare disease · Large community
Stronger together in the fight against VHL syndrome
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.
In cooperation with UCC of Serbia · founded in December 2025.
VHL in Serbia
Behind the numbers are people and 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.
53
confirmed mutations
at the UCCS Genetics Laboratory over 20 years
22
in regular monitoring
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.
What is VHL syndrome
An inherited disease affecting multiple organs
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.
Genetic disease
Mutation of the VHL gene - a tumor suppressor
Brain and spine
Hemangioblastomas of the CNS
Eyes
Retinal hemangiomas
Kidneys and pancreas
Cysts and tumors
Adrenal gland
Pheochromocytoma
Lifelong monitoring
A multidisciplinary approach
Our mission
The three pillars of our work
Every step we take is directed toward a single goal: a better life for people with VHL syndrome and their families.
We inform
Clear, accurate and accessible
We provide verified medical information about diagnosis, treatment and modern therapy, adapted to the Serbian healthcare system.
We connect
A community that understands
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
A voice for rare diseases
We advocate for access to modern therapy, a patient registry and better treatment conditions through cooperation with institutions.
Personal stories
„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.
Ljiljana Alagić
Ruma · president of the association
News and announcements
All newsLatest from the community
Events
30 July 2026
Support for People Living with Rare Diseases
A Unique Sports and Charity Event
Read more
Events
30 July 2026
Over 400 Participants Sign Up for the First-Ever Sremska Mitrovica Half Marathon
The first charity night half marathon, "Sirmium 21/7," will take place in Sremska Mitrovica on August 8, 2026, starting at 8:00 PM.
Read morePartners and collaborators
Building a community with leading institutions
The association was founded in December 2025 — memberships in international networks and partnerships with pharmaceutical companies are being established.
