Medical disclaimer

1. Educational nature of the content

The content of the site - including descriptions of symptoms, diagnostic methods, surveillance protocols, treatment options (including belzutifan) and personal experiences of other patients - has been prepared in good faith based on publicly available professional literature, the guidelines of international organisations (VHL Alliance, VHL Europa) and consultations with physicians.

Even so, such content cannot and must not replace an individual examination, diagnosis and advice from an authorised physician. Every patient is unique - medical history, prior findings, the specific type of mutation, overall health and many other circumstances all influence what is appropriate for them.

2. What you must NOT do based on information from the site

• Do not change your treatment on your own. If you are on any treatment prescribed by your physician, do not stop it or increase/decrease your doses without consulting them.
• Do not delay emergency care. For symptoms such as severe headache, dizziness, loss of balance, vision impairment, sudden pain or neurological deficits, seek emergency medical help immediately.
• Do not draw firm conclusions about your own diagnosis based on information from the site. If you notice symptoms that remind you of what you have read, contact a physician.
• Do not interpret other people's experiences as a prediction for yourself. Personal stories describe individual cases and do not necessarily reflect the course of the disease in other patients.

3. Always consult physicians in Serbia

For patients with VHL syndrome in Serbia, the primary referral centre is UKC Srbije (University Clinical Centre of Serbia), Clinic for Endocrinology, Diabetes and Metabolic Diseases. Before any decision about surveillance, diagnosis or treatment, talk to your physicians.

4. Status of modern therapy (belzutifan)

The site contains information about belzutifan, a targeted HIF-2α inhibitor registered in the USA and the EU. It is important to be aware of the following:

• Belzutifan is currently not available in Serbia. There is no manufacturer (MSD) donation programme, nor official reimbursement by the RFZO (Republic Health Insurance Fund).
• All information about the medicine is educational in nature and should not be interpreted as a recommendation, nor as directing patients to obtain the medicine outside official channels.
• The association is actively working to advocate for access to this therapy for Serbian patients; follow the Advocacy page for the latest information.

5. Surveillance guidelines in Serbia

In Serbia there are still no formal protocols for the surveillance of VHL patients. All the recommendations we cite (check-up intervals, scope of examinations, schedules) are based on the international guidelines of the VHL Alliance and VHL Europa, and serve as a point of reference - the final surveillance plan is agreed individually with a physician.

6. Errors and currency of information

We strive to keep the information accurate and up to date, but medical knowledge changes rapidly. If you notice an inaccuracy, outdated data, or have a suggestion for improving the content, get in touch with us. Thank you for contributing to the quality of this resource.

7. Emergencies

If your life is in danger or you need urgent medical help, call the emergency service - 194 or go to the nearest emergency department.