VASCERN News
16 May 2025
REDS4VEDS Day 2025: 10 years of awareness, advocacy, and the push for better care
Today, May 16, 2025 marks this year’s REDS4VEDS Day, a global awareness initiative for vascular Ehlers-Danlos syndrome (vEDS). Now in its tenth year, the campaign encourages people to wear red and share photos online to start conversations about a condition that remains under-recognised and often misunderstood.
The idea is simple but the message is vital: make vEDS visible.
Why vEDS awareness matters
vEDS is a rare genetic disease caused by mutations in the COL3A1 gene, affecting the production of type III collagen. This leads to unusually fragile arteries, intestines, and organs. Arterial or organ rupture can happen without warning, even at a young age.
Because it’s rare, vEDS is often diagnosed late or only after a major medical event. For patients living with it, everyday life involves managing risks, coping with uncertainty, and often explaining the condition to people including healthcare providers who may not be familiar with it.
Early recognition improves the chances of preventing complications. The REDS4VEDS campaign helps bring vEDS into both public and professional conversations.
The reality behind the diagnosis
For many, a vEDS diagnosis comes after years of unexplained symptoms or misdiagnoses. Some are diagnosed only after a serious complication, such as an arterial rupture. Others learn about the condition only after a close relative is affected.
Once diagnosed, patients must learn how to reduce physical strain, prepare for emergencies, and avoid medical procedures that could increase risk. But the emotional weight is just as heavy: the fear of the unknown, the strain of constant vigilance, and the lack of understanding from others can lead to isolation or anxiety.
Support groups and community networks play an important role but access to informed medical care and mental health support is equally essential.
Research in vEDS
This year, REDS4VEDS Day comes at a time of renewed hope in the field.
Results from the ARCADE trial, published in early 2025, offer new insight into vEDS treatment. The trial compared the current standard treatment (celiprolol) with a combination of celiprolol and irbesartan, a blood pressure medication.
The findings were significant: over two years, patients on the combination treatment experienced fewer serious arterial complications nearly half as many as those on celiprolol alone.
While this doesn’t change the need for caution or regular monitoring, it represents meaningful progress. For patients and families, it also means more informed choices and new questions worth discussing with their care teams.
VASCERN’s commitment and practical tools
As a European Reference Network for rare vascular diseases, VASCERN is proud to support REDS4VEDS Day and stand with the vEDS community. Through the Medium-Sized Arteries Working Group (MSA-WG), we bring together expert clinicians and patient advocates from across Europe to improve care for those living with vEDS.
Together, the group has developed a set of practical tools to support those living with vEDS and the professionals who care for them:
- vEDS Patient Pathway: A step-by-step guide for healthcare providers, designed to support diagnosis and ongoing care. It outlines recommended investigations, follow-up, and when to refer to a specialist.
- Do’s & Don’ts Factsheet: A quick-access factsheet co-created by doctors and patients, listing helpful practices and things to avoid from daily activity to emergency care recommendations.
- Pills of Knowledge: Short, topic-focused videos explaining essential aspects of vEDS.
- Clinical Patient Management System (CPMS): A secure, cross-border digital platform that allows VASCERN experts to provide cross-border discussions and second opinions for complex vEDS cases, especially in countries with limited rare disease expertise.
- Educational Webinars: Online sessions where patients, families, and clinicians can hear directly from vEDS experts and advocates. All past webinars are freely available to watch.
- eLearning Course: A self-paced online course co-developed by the MSA-WG, offering an overview of vEDS diagnosis, and long-term management designed for healthcare professionals and interested patients.
These resources are freely available and regularly updated, with input from both medical experts and patient representatives to ensure accuracy and relevance.
You can watch the replay of our webinar where we demonstrate how to use these tools. Watch here.
How you can take part
Want to support REDS4VEDS Day 2025? Here are a few ways to get involved:
- Wear red today and post a photo online with the hashtag #REDS4VEDS.
- Explore our resources and learn more about vEDS through VASCERN’s dedicated vEDS webpage.
- Share educational materials with others especially healthcare professionals who may not be familiar with vEDS.
- Connect with European patient organisations in the VASCERN European Patient Advocacy Group (ePAG), including:
- ANSEDH (Spain)
- VEDS France (France)
- AISED (Italy)
- VED (Netherlands).
- Other global organisations include The VEDS Movement and The Ehlers-Danlos Society.
Every action counts. Each conversation you spark, article you share, or resource you pass along helps make vEDS less invisible and brings us closer to better care, earlier diagnosis, and a more informed future for everyone affected.