EDS Guardians
Wisconsin, United States
About this Group
EDS Guardians, Inc., is the world’s first patient-to-patient, caregiver-to-caregiver, “pay-it-forward” organization dedicated to helping Ehlers-Danlos Syndromes (EDS) patients who lack support and need vital medical treatment, community, and compassionate care.
EDS Guardians is a 501(c)(3) public charity founded by EDS patient and healthcare advocate Kate Colbert, on the principle that the world would be a better place for children and adults with chronic illness if the patients themselves — the true experts — charted the course toward a brave new future where EDS patients finally feel fully seen and believed, medically and practically cared for, and valued and loved for their inherent strength and beauty.
EDS Guardians was founded in 2023 with a Board of Directors comprising EDS patients, caregivers, and medical experts, and will be unveiling practical and inspiring programs to bring together caregivers and patients in need with those who are strong enough to help.
Now offering practical support programs, mentorship, and educational offerings, plus patient-informed community research and awareness programs, and fun merchandise at our charity shop — www.ShopEhlersDanlos.com. Travel grants coming in 2025.
The need is great. With as many as 1 in 500 people having a heritable connective tissue disorder, there are a presumed 667,000 patients in the United States alone. But they FEEL alone — they ARE alone — when it comes to getting answers about their own health, feeling emotionally and practically supported, coordinating medical appointments, advocating for themselves in a complex and indifferent healthcare system, and finding their way across state lines or even oceans for the chance at a better life. With the financial support and volunteer army needed to fulfill our mission, EDS Guardians can and will make a meaningful difference in countless lives.
- Charity Organization
- Global Alliance Member
- This group holds virtual meetings
- This group holds virtual support groups
