About the association
Udruženje za retke bolesti VHL Srbije. Stronger together in the fight against VHL syndrome.
The three pillars of our work
We offer verified medical information about diagnosis, treatment and modern therapy, tailored to the Serbian healthcare system.
We bring together patients, families and doctors through personal stories, support and contacts with referral centers in Serbia and international VHL networks.
We work to make modern therapy available, to establish a patient registry and to improve treatment conditions through cooperation with institutions.
How it all began
The association was registered in December 2025 in response to the need of patients with Von Hippel-Lindau syndrome in Serbia for a place to come together, share experiences and advocate for their rights collectively.
Before the association was founded, patients and families were largely left on their own, without systemic support, without formal monitoring protocols, and without access to the modern targeted therapy that has long been available elsewhere in the world.
Our goal is to change that, through information, connection and systematic advocacy for the rights and needs of the VHL community before the healthcare system and institutions of Serbia.
The board
The association is run by a board of patients and close collaborators.
List of members coming soon
A detailed list of the board with biographies will be published soon.
Official details of the association
Legal information
- Full name
- Udruženje za retke bolesti VHL Srbije
- Date founded
- 18 October 2025
- Tax ID (PIB)
- 115354108
- Registration number (Matični broj)
- 28406193
Contact
- Address
- Vuka Karadžića 3A, 22400 Ruma Vuka Karadžića 3A 22400 Ruma PIB: 115354108 Tekući račun Raiffeisen banka 265-6220310000958-93 265-1000001216570-63
The association's statute
The statute defines the goals, governing bodies and way of working of the association. A PDF version of the statute will be available for download soon.
Join the community
Whether you are a patient, a family member, a doctor or someone who wants to help, get in touch and become part of the VHL community in Serbia.