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VEDS Action Month

VEDS Action Month – The V Matters
✌️Share your V photo and tell us why the “V” Matters.
Spread VEDS awareness through apparel.
📸Tell your longer-form V story, written or video.

Explain Why the “V” Matters

Let others know why the “V” matters to you! Make the “V” sign, just like in the photos. Post on your social media with #TheVMatters or tag us @vedsmovement and tell us why the “V” Matters to you!

Woman making a V sign with her fingers

You can also send us your photo and caption to post by emailing us at brandcomms@marfan.org.

Delaney V Matters
“It’s not just being flexible- it can be lethal and effects all parts of life.” – Delaney
Ryan V Matters
“The ‘V’ Matters because lives depend on it-lives of people I’m honored to serve and fight for every single day.” – Ryan, Director, The VEDS Movement

VEDS Action Month Apparel

Spread awareness without saying a word! Congratulations to our community apparel design winners, Mariah Wessel-Draper (Hope Design) and Rosanne Wetzel (Action Month 2025)! Both designs are available to purchase on our online store. Choose from t-shirts, sweatshirts, or hoodies.

Share Your Story

Community member sharing their V 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.

#TheVMatters Day of Giving — October 16

Because every story, every family, and every life with VEDS matters.

On October 16, we’re coming together for a one-day event dedicated to supporting those affected by Vascular Ehlers-Danlos syndrome. Your gift fuels our mission to advance research, raise awareness, and strengthen the support network for our community.

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.

New VEDS Resources to Support YOU

We’ve got new resources to help improve emergency care and provide crucial support for our community.

Check back throughout Action Month for additional new resources!

Prepare for Emergencies

Preview of the VEDS First Responder Quick Guide

Use this resource to build a bridge between our community and first responders, providing crucial knowledge about VEDS in emergencies.

First Responder Quick Guide Guide Instructions
Preview of the VEDS Emergency Preparedness Kit

A collection of important items to have ready for emergencies. This kit is like a silent guardian by your side!

Emergency Preparedness Kit Kit Instructions
Preview of the VEDS Physician Infocard and Hospital Sign

Streamline your healthcare experience with these resources. Together, they empower patients to take charge of their care, fostering clarity and confidence.

Physician Infocard Hospital Sign Resource Instructions

Share Our Infographic

Help spread crucial awareness by sharing this infographic on your social media channels. A simple share can make a huge difference in educating your network about the signs of VEDS.

Get Support

VEDS community group photo at a conference

Find your VEDS community. Get the support you need. The VEDS Movement is here for you and your family every step of your journey.