Link & Network

ProRaris is the umbrella organisation of Swiss patient organisations for rare diseases. It represents the interests of affected individuals and their families towards policy makers, authorities and professional institutions, promotes networking and knowledge exchange, and advocates for improved diagnosis, care and research. ProRaris raises public awareness and strengthens the voice of patients at national level.

The Rare Disease Action Forum is an independent organisation based in Switzerland dedicated to promoting concrete actions for people living with rare diseases. It brings together patients, policy makers and experts from healthcare, research and industry to strengthen dialogue and develop sustainable solutions. Its goal is to improve policy frameworks, foster innovation and strengthen access to diagnosis, therapy and care at national and international level.

EURORDIS – Rare Diseases Europe is a pan-European alliance of patient organisations for rare diseases. It represents more than 30 million people affected in Europe, promotes research, networking and knowledge exchange, and advocates at EU level for improved diagnostics, therapies and care. EURORDIS strengthens the voice of patients in policy, science and healthcare systems and helps drive sustainable solutions for rare diseases.

The German Angiology Association is an important point of contact and complement in the German-speaking region for people living with vascular malformations and angiodysplasias. The association provides extensive patient information, supports peer exchange and fosters networking with specialised centres. For people in Switzerland, it offers additional orientation, knowledge and perspectives, especially for rare vascular diseases and cross-border questions.

The COMPGEFA Compendium of Vascular Anomalies is a comprehensive professional reference work on congenital and acquired vascular anomalies. It consolidates up-to-date medical knowledge on classification, diagnostics, treatment and disease course and addresses healthcare professionals across disciplines. The aim is to promote consistent terminology, improve quality of care and support well-founded interdisciplinary collaboration.

VASCERN is a European Reference Network for rare vascular diseases. It brings together specialised centres, healthcare professionals and patient organisations from across Europe to pool knowledge, expertise and best practices. The goal is to improve diagnosis, treatment and long-term care for people with rare vascular diseases, promote cross-border exchange and ensure high standards of care across Europe.

HHT Swiss is the Swiss patient association for people affected by Hereditary Haemorrhagic Telangiectasia (HHT), also known as Rendu-Osler-Weber disease, a rare hereditary vascular disorder. Founded in 2016 and based in Nyon, the association informs patients and families about symptoms, diagnoses, treatment and medical advances, represents their interests before authorities and health services, and promotes research, education and networking at the cantonal, national and international levels. HHT Swiss is a member of ProRaris, EURORDIS and HHT Europe.

The Stiftung für Gefässfehlbildungen, based in Stettlen in the canton of Bern, promotes research, innovation and public information in the field of vascular medicine. It funds scientific projects, supports specialists with outstanding achievements, organises continuing education, workshops and cooperative formats such as the Berner Dialog, and provides accessible information on vascular malformations. In doing so, it strengthens knowledge of congenital vascular anomalies among healthcare professionals and the wider public and improves the basis for diagnosis and treatment.