Participants in clinical trials should be pro-actively offered the results of trials in which they have participated. This paper, developed with major UK research funders, sets out 8 principles for sharing results with trial participants trialsjournal.biomedcentral.com/articles/10....

Planning for #pregnancy with a vascular anomaly (VA)? You don’t have to navigate it alone.

Our new patient-friendly booklet covers everything from #contraception to delivery written for people living with a VA such as AVMs, PROS, venous malformations, and more.

📘 Download here ➡️ bit.ly/4jDwqwB

One man. One genetic test. Two diagnoses considered. Was it Sturge-Weber? Klippel-Trenaunay? #Genetics gave a clearer answer: GNA11 mosaicism.

This piece explores how precision genetics is reshaping the way we talk about and treat vascular anomaly syndromes.

🧬 Read here: bit.ly/3XNOTht

Imagine you could no longer feel the grass under your feet tomorrow. That tickle, the slight dampness, the counter-pressure of the earth. That's what happened to me... (Article in German)
#rarediseases #angiodysplasia #switzerland #chronicillness

angiodysplasie.ch/zu-mobil-fue...

We are looking forward to dach-se.org in Innsbruck. #raredisease #congress #austria #DACH #SelteneErkrankungen #april2025

Interested in #vascular #biology and #diseases related to abnormal development. Our #review on #arteriovenous malformations and their therapeutic management was just published in JCI ! Extracranial arteriovenous malformations: towards etiology-based therapeutic management
www.jci.org/articles/vie...

We are now also an associate member of #EURORDIS. EURORDIS - Rare Diseases Europe is a unique, non-profit association of over 1000 rare disease patient organizations from 74 countries. #rarediseases #Switzerland #angiodysplasia #vascular #malformation #europe www.eurordis.org