The voice of the VHL community in Serbia
The Association works systematically to improve treatment conditions and the quality of life of patients with Von Hippel-Lindau syndrome, through dialogue with the Ministry of Health, the RFZO (National Health Insurance Fund), medical institutions, and pharmaceutical companies.
Three key advocacy points
Access to belzutifan (HIF-2α inhibitor)
The drug is registered in the USA and the EU, but it is not yet available in Serbia and there is no donation program. We advocate for this targeted therapy to become available to patients in Serbia.
A national registry of VHL patients
A centralized registry helps with better healthcare planning, statistics, and faster communication to patients about new therapies.
Formal surveillance protocols
There are still no official surveillance protocols for VHL patients in Serbia. We work with physicians and institutions to establish them.
Timeline
Belzutifan (Welireg, manufactured by MSD) is an oral HIF-2α inhibitor, the first targeted drug approved specifically for VHL syndrome.
- 2021
FDA approval (USA)
The first official approval of belzutifan (Welireg) for VHL patients with compatible tumors.
- 2023
EMA approval (EU)
The European Medicines Agency approved belzutifan for use in EU countries.
- Now
Status in Serbia
The drug is not available; there is no donation program and no reimbursement from the RFZO (National Health Insurance Fund).
- Goal
Access for Serbian patients
Our primary task, pursued through dialogue with the Ministry of Health, the RFZO, and the manufacturer.
Your support carries weight
Advocacy is a long-term effort. The more voices there are, the greater the chances for change.
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If you represent the media, an institution, or a pharmaceutical company, get in touch directly.
Contact detailsFor institutions, media, and pharmaceutical companies
We are open to dialogue with everyone who can help improve treatment conditions for VHL patients in Serbia. Contact us directly.