Practical guides and support
A section with concrete resources for newly diagnosed patients and their families: how to navigate the healthcare system, what schedule of check-ups to follow, where to find psychological support, and what patients' rights you have.
Content in preparation
The association was only recently founded (December 2025) and we are working on preparing practical materials. Below is a list of what is coming, and in the meantime you will find resources that are already available further down.
Guide to Serbia's healthcare system
How to get referrals, RFZO (national health fund) procedures, which exams to request and where, and how to organise check-ups.
Recommended surveillance protocol
A practical schedule of check-ups by age and organ, adapted from international guidelines and the input of Serbian institutions.
Psychological support
A network of psychologists and counsellors experienced in working with patients living with rare diseases.
Patients' rights
Disability status, the right to medication, exemption from co-payment, and other social and healthcare benefits.
Brochures and downloadable materials
A guide for the newly diagnosed (PDF), information for families, and materials for general practitioners.
What you can use right now
While we prepare dedicated guides, here is what is already on the site and useful for the newly diagnosed.
A detailed overview of VHL syndrome
What the disease is, its manifestations, diagnosis, treatment, and modern therapy - all in one place.
Open the guidePersonal stories from the community
Read about what other patients and their families have been through. The best support comes from lived experience.
See the storiesDirect contact with the association
Have a specific question? Get in touch and we will connect you with someone who has been through the same thing.
Contact usHelp us build a better guide
Your experience with the healthcare system - what worked, what did not, which doctors helped - is the greatest value for those who have just received a diagnosis. Tell us about your experience.