Paying it forward

in the Ehlers-Danlos Syndromes community —

patient-to-patient, for the common good.

The world’s only 501(c)(3) charitable organization with a patient-to-patient, caregiver-to-caregiver, “pay-it-forward” mission to help EDS patients who lack support and need vital medical care.

Travel Grants & Assistance

One of the most challenging parts of having EDS or caring for someone with EDS is accessing world-class care when it’s usually not in your own back yard. Whether you’re getting on a plane, a train, or an automobile — and whether you’re headed out of town for diagnostics, treatments, or surgeries — a day, week, or month away from home can be expensive and sometimes out of reach. EDS Guardians can help. TRAVEL GRANT PROGRAM COMING IN 2025

Patient Advocates

Long before it was an official offering at a federally recognized charity, advocating for patients — before, during, and after medical appointments — was something that EDS Guardians founder Kate Colbert was often asked to do. As a professional communicator and high-stakes communications coach, Kate knows how to help patients and providers have breakthrough conversations and lay the groundwork for meaningful relationships and optimal health outcomes.

Stories & Support

You are not alone. Your symptoms, your life situation, your point in the diagnostic or treatment journey — while they are unique to you, there are others who have gone before you and can show you the way. Through several offerings to be unveiled in 2024 — like a podcast and a blog — patient stories at EDS Guardians will help you have your own “ah ha” moments, discover life hacks, better understand your own health, and feel seen and supported as never before.

Complex health,

away from home

Whether traveling solo, as a patient/caregiver duo, or as a family, your needs when you’re “on the road” are complicated — and expensive.

EDS patients who travel for diagnoses, treatments, second opinions, and surgeries tell us that the cost of plane tickets, gasoline, hotel accommodations, ride shares, food, pet boarding, and life hacks and medical equipment that make travel possible often add up to more than they can bear.

The result? Patients suffer longer. Complications become more severe. Patients and family lose hope. Travel grants — ranging in size from $500 to $5,000 — can make all the difference.

Our travel grant program is set to launch in 2025, pending generous funding from donors and foundations. Please give today.

Living your best bendy life

first requires

the best possible communication

with medical providers

It’s not easy sharing your complex medical history in 15 minutes with a doctor who is a stranger. It’s also difficult to ask tough questions, understand medical jargon, be heard, or make a plan for what’s next.

Your providers are experts but so are you. You’re the world’s leading authority on your body. Do your providers understand and appreciate that?

Patients can simultaneously advocate for themselves and teach EDS newbies in the healthcare profession to become more aware and informed about EDS.

Introducing “Doctor/patient communications training for zebras” — a forthcoming series of webinars and workshops for patients, providers, and caregivers. Join our list to get invitations to upcoming events!

EDS Guardians, Inc., is a federally recognized 501(c)(3) tax-exempt charity. Your gift may qualify as a charitable deduction for federal income tax purposes.

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EDS Guardians, Inc., is a federally recognized 501(c)(3) tax-exempt charity. Your gift may qualify as a charitable deduction for federal income tax purposes. 〰️

EDS Guardians was founded because we believed 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.