The V Matters.
October is VEDS Action Month
What’s ahead this month
We’ll add new resources here as they’re shared. Check back all month to learn and share.
Share to Educate
- New resources coming soon.
Helping care teams act fast
- Coming soon.
Know the V. Say the V.
- Coming soon.
Scientific Progress + Hope
- Coming soon.
Explain why the “V” matters
Let others know why the “V” matters to you! Wear red and make the “V” sign, just like in the photos. Post on your social media with #TheVMatters and #VEDSActionMonth or tag us @vedsmovement and tell us why the “V” Matters to you!
Want us to share your photo? You can also send us your photo and caption to post by emailing us at brandcomms@marfan.org.
For 21 years, I’ve had to explain this to medical professionals. It’s been such a painful reminder of how misunderstood VEDS still is, and why awareness like this matters so deeply.
It’s not just being flexible- it can be lethal and effects all parts of life.
The V Matters. The distinction is Valid. The distinction is Vital. Together we will be Vehement. Together, we will be Victorious.
VEDS Action Month apparel
Spread awareness without saying a word! This is your last chance to get Mariah Wessel-Draper’s VEDS Hope design, our community design winner from VEDS Action Month 2025. Choose from t-shirts, sweatshirts, or hoodies.
Share your story
Help others with VEDS and spread awareness by telling your story! You can tell us about getting diagnosed (and barriers), not feeling heard in medical settings, how confusion with other hypermobility disorders impacts you, thriving with VEDS (at work, through hobbies, and in daily life), or how meeting others in the community has impacted you. We’ll share as many stories as we can throughout the month.
The V Matters Day
Because every story, every family, and every life with VEDS matters.
On October 23, we’re coming together for a one-day event dedicated to supporting those affected by Vascular Ehlers-Danlos syndrome. Wear red, share your photo, and tell the world why the V matters. Your gift fuels our mission to advance research, raise awareness, and strengthen the support network for our community.
Featured content
Featured Webinar: Meet the Experts
Watch the recording of our VEDS Action Month 2025 Fireside Chat webinar, featuring an insightful discussion with leading VEDS experts on managing the condition and the latest research advancements.
Read Our Guest Blog
Director Ryan Rodarmer explains the critical importance of recognizing the distinct nature of VEDS (“Why the ‘V’ Matters”) in a compelling guest blog for the National Health Council, highlighting the need for specific awareness and care.
We’ll be sharing new factoids, community stories, and resources all month! The easiest way to help our education and awareness efforts is by sharing our posts with your own network.
What is Vascular Ehlers-Danlos syndrome (VEDS)?
Vascular Ehlers-Danlos syndrome (VEDS) is a genetic condition that affects the body’s connective tissue, which holds all the body’s cells, organs, and tissues together.
Cause
VEDS is caused by changes in the gene called COL3A1. People are born with the condition, and these genetic changes create the features and medical problems associated with VEDS.
Impact on the body
VEDS can affect many different parts of the body, making them prone to tears, which can be life-threatening. Key areas include:
- Arteries
- Hollow organs (like the intestines or uterus)
- Skin
- Lungs
Common signs & diagnosis
While VEDS is quite variable, people are often diagnosed when they experience:
- Easy and frequent bruising that is not explained by other causes.
- Spontaneous bowel and arterial tears or ruptures.
- Some individuals may also have characteristic facial features, thin skin, and tissue fragility.
VEDS resources to support you
We’ve got resources to help improve emergency care and provide crucial support for our community.
VEDS911.com: Explore our life-saving mobile site for first responders. We encourage you to share it with your local emergency personnel.
Psychological Considerations in VEDS: Download our guide to help mental health professionals better understand and support the unique challenges of living with VEDS.
Emergency Wallet Card: Download the redesigned card that gives medical personnel critical information quickly in a crisis.
Prepare for emergencies
Use this resource to build a bridge between our community and first responders, providing crucial knowledge about VEDS in emergencies.
A collection of important items to have ready for emergencies. This kit is like a silent guardian by your side!
Streamline your healthcare experience with these resources. Together, they empower patients to take charge of their care, fostering clarity and confidence.
Share our infographics
Help spread crucial awareness by sharing these infographics on your social media channels. A simple share can make a huge difference in educating your network about VEDS.
Know the signs
Get support
Find your VEDS community. Get the support you need. The VEDS Movement is here for you and your family every step of your journey.
