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May 17 2024

Raising Awareness for Vascular Ehlers-Danlos Syndrome on REDS4VEDS Day


Today, VASCERN is proud to join the global community in celebrating REDS4VEDS Day, a day dedicated to raising awareness for Vascular Ehlers-Danlos Syndrome (vEDS). This rare genetic disorder affects the body’s connective tissues and can pose serious health challenges for those diagnosed.

Vascular Ehlers-Danlos Syndrome (vEDS) is a rare genetic disease caused by mutations in the COL3A1 gene, which leads to defects in the body’s own collagen. This results in fragile blood vessels and organs, making even minor injuries potentially life-threatening. Symptoms of vEDS can include easy bruising, thin skin with visible veins, and severe arterial, intestinal, or uterine fragility.

Early diagnosis and appropriate treatment can significantly improve quality of life. Awareness of vEDS is still limited, often leading to delayed diagnosis and lack of understanding. REDS4VEDS Day serves as a platform to educate the public and the medical community about vEDS.

Our Medium-Sized Arteries (MSA) Working Group is dedicated to improving the lives of those affected by vEDS through research, education and collaboration. This group brings together healthcare professionals and patient advocates to share best practices in the management of vEDS.

How You Can Get Involved

This REDS4VEDS Day, join us in raising awareness and supporting the vEDS community:

  • Wear Red: Show your support by wearing red and sharing photos on social media with the hashtag #REDS4VEDS.
  • Educate: Learn more about vEDS and share this information with your community. You can find more information about vEDS here.
  • Support Research: Consider donating to organizations dedicated to vEDS research and patient support.
  • Share Resources: Direct those affected by vEDS to resources and support networks, such as VASCERN, for the best care and information.

REDS4VEDS Day highlights the power of community and the importance of awareness in fighting rare diseases. As we celebrate, let’s remember the strength and resilience of the vEDS community and work towards a world where individuals with vEDS receive the care and support they deserve.

For more information and resources on vEDS, click here.

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