Ehlers-Danlos Syndrome Research Foundation

Improving the care of people with EDS / HSD and related disorders by advancing innovative research and educating healthcare providers.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndromes (EDS) are heritable disorders in which the body’s connective tissue lacks structural integrity.

People with EDS suffer from a range of systemic problems, including widespread pain, frequent joint subluxations or dislocations, and gut and nervous system dysfunction.

If untreated, EDS can be highly limiting — even disabling. Current estimates suggest 1 of every 2500-5000 people has EDS; since misdiagnosis is common, we believe the actual number is much higher.

In addition to struggling to get a diagnosis, people with EDS often lack access to proven, affordable treatments.

Our Approach

 

Today, too few healthcare professionals have a working knowledge of EDS and its common comorbidities, and too little time and money is spent researching these conditions.

As a result, the over 650,000 EDS/HSD patients in the US often see many doctors spend thousands of dollars, and experience worsening health before even receiving a diagnosis. Many struggle to manage their conditions: there are few treatment options that have been proved effective, and almost none that are covered by insurance.

EDSRF is working to ensure that EDS/HSD patients are diagnosed promptly and can access affordable and effective care across multiple organ systems and health institutions.

We do this in two ways:

first.

Advancing innovative research on treatment modalities, efficacy, and delivery

next.

Educating healthcare providers across disciplines on the diagnosis and management of this patient population.

We put patients and their healthcare providers at the center of all we do: their perspectives and experiences inform our research, and we produce resources that meet their needs.

Our work has three areas of focus:

  • Demonstrate impact of underinvestment in EDS.

    The failure to diagnose patients quickly or treat them adequately is expensive and harmful. The costs are borne by patients paying for unhelpful care; private insurers, for the fees that are covered; and society, in the form of Medicare and Medicaid spend, disability payments, and lost productivity. EDSRF produces research quantifying these costs and sharing typical patient journeys, making the case that more investment in EDS/HSD education and care would have a positive return.

  • Advance research on treatment modalities, efficacy, and delivery.

    EDSRF takes an innovative approach to research. In addition to undertaking research of our own, we aim to support other clinicians and scientists in analyzing and their own data. We plan to present and support others in presenting research at medical meetings, publish findings in top journals across multiple specialties, and promote research findings among healthcare providers across disciplines.

  • Educate healthcare professionals about EDS, with emphasis on how to identify, refer, and manage patients.

    EDSRF creates resources to help a range of health professionals identify, diagnose, appropriately refer, and manage their EDS patients. These resources will include clinical tools for providers, informational one-pagers and videos, and teaching modules for healthcare professionals (eg, CME). EDSRF will make resources freely available on our website, and share them widely at medical conferences, medical and physical therapy schools, and beyond.