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.
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.
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.
