Together, we support, advocate, and empower the VHL community across Europe.

VHL Europa is dedicated to improving the lives of individuals affected by Von Hippel-Lindau (VHL) disease. Through collaboration with patient organizations, promoting research, and advocating for patient rights, we are working toward a brighter future for everyone impacted by VHL across Europe.

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Members

The members are all part of VHL Europe, representing national VHL groups from across the continent.

Diagnosis & treatment

Diagnosing von Hippel-Lindau (VHL) disease involves clinical evaluation, imaging tests (like MRI and CT scans), and genetic testing. Treatment focuses on monitoring and managing tumors through regular screenings. Options may include surgery or targeted therapies, depending on tumor type and location. A multidisciplinary approach ensures comprehensive care for individuals with VHL.

Events calendar

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Transparency & Funding

Orphanet (www.orpha.net) has been working with the European Commission in Brussels to establish centrally-certified Expert Centres in Europe to forrare diseases, such as VHL.

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Latest news

  • VHL Europa Welcomes CHMP’s Positive Opinion for Belzutifan as First Systemic Treatment for VHL Patients

    VHL Europa, representing the voice of von Hippel-Lindau (VHL) patients across Europe, is thrilled by the news that the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has adopted a positive opinion recommending the conditional approval of WELIREG® (belzutifan). If approved, belzutifan will become the first systemic treatment available for adult patients…

  • Long-Term Treatment for VHL-Associated Brain and Spine Tumours?

    This study investigated the effectiveness of belzutifan, a daily oral medication, in treating central nervous system (CNS) haemangioblastomas associated with VHL disease, usually in the brain and along the spine. Researchers followed patients for over three years to assess how well the treatment reduced tumour size and its safety profile. Among the 50 patients with…

  • Meeting Report: VHL International Medical Research Conference, 19-20 October 2024, Milan, Italy

    Our journey to Milan for the VHL International Medical Research Conference began on a rainy Friday, 18 October. A public transport strike made for a complicated arrival, we finally got to the hotel across town. We held our Annual General Assembly for VHL in the hotel in the evening of October 18th, 2024, with members…

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