Magyar VHL Társaság

Founded in 1999, Magyar VHL Társaság is a non-profit association based in Budapest, Hungary working on health, medical research.

The Hungarian VHL Society is a registered public benefit civil organisation, founded in 1999, that supports people living with von Hippel-Lindau (VHL) syndrome in Hungary. Its members are patients, affected individuals and doctors. The society works to locate people with VHL, provide them with information about the disease, organise genetic testing and regular medical check-ups, and publish educational materials on hereditary diseases, including a care booklet. It represents Hungarian VHL patients nationally and internationally, takes part in rare disease networks, organises symposia and patient meetings, and co-founded VHL-Europa, a European umbrella alliance of VHL patient organisations. It also promotes research through a national patient registry initiative.