Our association is a self-help group by and for people living with congenital vascular malformations (angiodysplasias) as well as their relatives. We were founded in January 2025 and are currently in the process of building up our organisation. At present, we have ten active members, all of whom are personally affected by different forms of these rare conditions. As there are only few known affected individuals in Switzerland, networking can initially be challenging – however, our association continues to grow steadily.
Who we are
All of our members live with angiodysplasias, meaning congenital vascular malformations, including the following diagnoses:
- Arteriovenous malformations (AVMs)
- Venous malformations
- Lymphatic malformations
Some members are also affected by more complex syndromes, such as:
- Sturge–Weber syndrome
- Klippel–Trenaunay syndrome
- PIK3CA-Related Overgrowth Spectrum (PROS)
- PHTS (PTEN Hamartoma Tumor Syndrome)
- Parkes Weber syndrome
What we do
Our goal is to provide a platform for exchange, mutual support, and joint engagement. We aim to give affected individuals a voice, share knowledge, and contribute in the long term to improving healthcare structures in Switzerland.
In particular, we are committed to:
- Connecting affected individuals – both digitally and in person
- Raising awareness among the public and healthcare professionals
- Collaborating with specialised medical centres
- Promoting dialogue between patients and physicians
- Establishing a medical advisory board to actively shape care structures
Our activities
- Monthly online meetings via Microsoft Teams to discuss organisational matters and support one another.
- Every two months, we hold a dedicated experience-sharing session focusing on living with our condition. The next call will take place on 20 April 2026 at 7:00 pm.
If you are interested, we would be happy to send you a non-binding invitation.
- Our annual general meeting most recently took place on 11 January 2026 in Olten.
- On 27 February 2026, we will participate in the Rare Disease Day event in Bellinzona.
- Further in-person meetings are planned throughout the year.
- In addition, our members have access to a WhatsApp group enabling direct and informal exchange at any time.
Working together for better structures
We are currently working intensively on establishing a medical advisory board for our association. To this end, we are in contact with physicians from specialised centres in Switzerland. Another key objective is interdisciplinary networking across different medical fields – as close collaboration between specialists is essential for rare conditions such as angiodysplasias.
Become a member
If you would like to become a member, please send the completed form either to the postal address indicated on the form or by email to info@angiodysplasie.ch.