About Us

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.

Paying it forward in the Ehlers-Danlos Syndromes community — patient-to-patient, for the common good.

EDS Guardians is dedicated to fundraising, advancing treatments, elevating awareness, and supporting individuals affected by Ehlers-Danlos Syndromes,.

We identify, sponsor, and support life-saving medical and post-treatment procedures, housing, and travel for individuals diagnosed with EDS who lack support and need vital care.

“What might the world look like — if every time a patient got better (or even just a little bit stronger) — they helped another patient?”

— Kate Colbert, Founder of EDS Guardians, Inc.

This is the question she asked herself, then her husband, then a group of generous supporters before deciding to attempt to save the life of an EDS patient in the fall of 2023. Kate, at the time, was 17 months post-op from surgery to repair a tethered spinal cord and was feeling so grateful for her improved gait and neurological functioning that she wanted to help an extremely complex EDS patient (who needed tethered cord release, craniocervical fusion, and vascular compression surgeries). That medical mission is what started it all. Today, EDS Guardians is a federally recognized , tax-exempt public charity and the number of patients we can help is limited only by the generosity of our donors.

EDS patient, Kate Colbert, and her caregiver husband, Robert Colbert, traveling by plane from Wisconsin to Rhode Island for an 18-day mission to help another EDS patient in need.

Board of Directors

  • Kate Colbert

    FOUNDER, EXECUTIVE DIRECTOR, & BOARD PRESIDENT

    EDS patient, certified patient advocate, communications professional, medical writer, marketer, speaker, and bestselling author.

  • Linda Bluestein, MD

    DIRECTOR

    World-renowned expert on Ehlers-Danlos Syndromes and other hypermobility disorders, founder of Hypermobility MD, and host of the Bendy Bodies Podcast.

  • Dawn Renae Carson

    DIRECTOR

    EDS patient, certified patient advocate, personal historian, former publishing professional and television executive, and writer.

  • Robert Colbert

    DIRECTOR, CHIEF TECHNOLOGY OFFICER, SECRETARY, & TREASURER

    EDS caregiver/spouse, IT professional, and community advocate.