Vascular Ehlers-Danlos syndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs. vEDS can cause life-threatening complications, such as aneurysm, dissection, and rupture of the

🧡 Did you know #support groups and patient organizations are vital for people with rare #vascular diseases? These communities offer emotional support, share information, and advocate for awareness and resources. Learn more: bit.ly/3WwA9St #RareDiseases #PatientSupport

What do you wish everyone knew about aortic dissection? Tell us in comments, and help raise awareness this September. To share a personal story in longer form, email [email protected] with your thoughts. #loeysdietz #marfan #VEDS #aorta #aorticdissection #awareness

🚀Only 2 days left to register! Join us as Prof. Dr. Markus Krämer discusses Moyamoya disease in Caucasian populations. Don't miss out! 🗓️ August 07, 5 PM CEST 👉 Register Here: bit.ly/3SgxyLb #MoyamoyaDisease #RareDiseases #Neurology #MedicalWebinar

📢 Today’s the day! Join us at 5 PM CEST for our webinar on Moyamoya disease in Caucasians with Prof. Dr. Markus Krämer. Last-minute registrations open!👉 bit.ly/3SgxyLb #Moyamoya #RareDisease #webinar

🎥Missed our June 13th webinar? Catch Prof. Dr. Markus Krämer’s insights on Moyamoya Angiopathy (in German). Learn about diagnosis, symptoms, and management. 👉 Watch Now: bit.ly/4fEJyQU #Moyamoya #Webinar #RareDiseases #Healtheducation #vascularhealth

☀️It’s that wonderful time of the year when our team takes a well-deserved break to relax and recharge. We'll be back soon, recharged and ready to continue our mission. Explore our extensive resources in the meantime👉vascern.eu. Have a great #summer! 🌼

🥳We’re back! After a refreshing break, we are ready to continue our mission. Stay tuned for new updates, resources, and events. Let's keep raising awareness, sharing knowledge, and supporting each other.💪 #RareDiseases #Community

📅 Mark your calendars for August 30 at 2 PM CEST! Join @RareDiseasesInt, Egypt, Qatar, & Spain in a webinar to discuss advocating for a World Health Assembly Resolution on #RareDiseases in 2025. 🌍 Learn more & register👉bit.ly/4cG5SXG #WHA2025 #HealthEquity

Looking for information about a #RareDisease? The Genetic and Rare Diseases (GARD) Information Center from NCATS has easy-to-understand info in English & Spanish on thousands of rare conditions. Find out more with NIH @MedlinePlus Magazine: loom.ly/gqVpeGA

As #Paris2024 has demonstrated, sport goes beyond physical activity; it fosters a sense of belonging and unity. If you have faced barriers to accessing social activities due to your rare condition, share your experience in the #RareBarometer survey: tiny.cc/RB_DailyLife

We are currently accepting applications for our research grant program awards. View our guidelines and apply: ow.ly/XInX50T7LxK #research #researchscientist #researchfunding #marfan #loeysdietz #veds #researchfunding

2024 #ESCGuidelines for the management of peripheral arterial and aortic diseases: Developed by the task force on the management of peripheral arterial and aortic diseases of European Society of Cardiology, Endorsed by the European Association for Cardio-Thoracic Surgery EACTS, the European

Exciting to see Julie De Backer sharing crucial insights on pregnancy in hereditary thoracic aortic disease at the ESC congress! #VascularHealth #RareDiseases

Inspiring work by Dr. Bart Loeys at #TromsoAorta2024, pushing the boundaries of Hereditary Thoracic Aortic Disease genetics and epigenetics. Global collaboration like this is key to improving patient outcomes! 🌍💡

The field of #vascular anomalies is progressing rapidly towards the use of #targeted drug therapies in conjunction with current standard of care approaches. Interested in the topic? Come present and hear others at #VAC 2025 in Berlin 11-14/2/2025 ! lnkd.in/ee8K_374

🚨 Reminder - #CLAResearch grant available through the #MDBR2024 Pilot Grant Program. Apply by September 20! Open to international research community🌟 bit.ly/MDBR2024RFA #RareDisease #ResearchFunding #CLAawareness #ComplexLymphaticAnomalies Miikka. Vikkula

Undiagnosed rare diseases are a critical yet often overlooked part of our community and that is why we’re proud to be a member of the Undiagnosed Diseases Network! It is vital that these peoples’ needs are recognised and addressed as they are an integral part of our community!