The mission of our non-profit 501(c)(3) organization is to raise awareness for vascular Ehlers-Danlos Syndrome (vEDS). We also raise funds to support patient care, patient outreach, and research to find better treatments for vEDS. We do this in honor of Andie Mae G. Carpenter. Andie passed away at age 20 from complications of vEDS. Better education and care could have saved her life. Our mission is to help other vEDS families have more time with their loved ones like we would have loved to have.
February 28, 2023 Rare Disease Day! https://www.rarediseaseday.org/
Spread the words about VEDS and other rare diseases on social media! Use the hashtag #shareyourcolours.
Additional vEDS Resources
Information for vEDS patients and primary care doctors of patients - This document gives basic information about diagnosing patients and basic care precautions that should be put into place once a diagnosis has been reached. EVERY newly diagnosed vEDS patient should be given this to read.
vEDS Collaborative - they are dedicated to supporting the vEDS community in driving patient-centered outcomes research to improve the management of vEDS and increase the quality of life for people impacted by vEDS. Their mission is to create and sustain a collaborative network of diverse stakeholders, individuals, and organizations to understand patient needs and determine the research methods best suited to study the adverse health implications associated with vEDS.
Defy Foundation - An organization dedicated to raising awareness and providing education for vEDS patients, families, and medical providers.
Fight vEDS - An organization dedicated to educating others about vEDS.
Annabelle's Challenge - A UK based non-profit foundation that actively connects vEDS patients with resources they need to help manage their disease.
The VEDS Movement - The VEDS Movement is a division of The Marfan Foundation dedicated to improving the lives of those affected by VEDS. Their website contains information and resources for patients and professionals about VEDS, as well as ways for those affected to meet others on the same medical journey and get support. In addition, researchers can find out more information about the Foundation’s grant program and patients can learn more about studies enrolling individuals with VEDS.
The Translucent One - Katie Wright talks about her story with VEDS in a blog and vlog, and hosts a podcast called Staying Connected where she talks to others affected by VEDS.