Together for our shared mission!

Thank you for a dazzling year!

Give today. Our hope begins with YOU!

Our mission is to reach more of the EDS and HSD community, and global health care network than ever before. Our goal is to raise $285,000 and we need your support!

Through this challenging year, your contributions have funded pioneering research, life-changing support, and world-class education, and enabled us to reach more people than ever before with international virtual events.

Read on to learn more about how your support is making a difference for people living with EDS and HSD, and to the healthcare providers caring for them.

Watch the 2021 video!

Why your generosity is so important

As each year passes, demand for helpline support increases, as people worldwide contact us looking for medical information, resources, and emotional support, often at times of desperate need. 

Through this challenging year, your contributions have funded life-changing support enabling our helpline advisors to answer over 700 helpline calls and 3500 helpline emails.  

My son was having a terrible experience at school. The Ehlers-Danlos Society helpline was an amazing support and has helped our family so much.” ~ Benita 

We held 100 virtual support groups this year, connecting people all around the world to peer support and community, many meeting someone else with EDS or HSD, for the very first time. New groups were introduced for kids and teens! 

 As someone newly diagnosed, I find the virtual support groups so helpful and comforting.” 

 

Early diagnosis, treatment, and effective multidisciplinary care for those living with EDS and HSD, is desperately needed worldwide. To that end, your contributions have funded world-class educational programs. 

More than 745 Healthcare Professionals worldwide have now trained through our free, virtual, EDS ECHO program: improving their knowledge of EDS and HSD, and resulting in better care and quality of life for individuals living with these complex conditions. 235 advocates have joined the EDS ECHO Advocacy program to champion the global community and advance awareness and support at a local level.  

Our goal is to have 1000 individuals to have joined our programs and clinical network by the end of 2021!

Because of The Ehlers-Danlos Society, I have hope of a better life. I found a specialist in Italy through their directory and we talked about options to improve my life. This would not have been possible without the information from The Ehlers-Danlos Society. I thank you for that.” ~ Cristian 

Our goal is to ensure consistent and groundbreaking research into the complexities of EDS and HSD, supporting the development of effective therapies to improve quality of life. Your gifts have funded pioneering research with $1,265,000 awarded in global research grants this year, including molecular studies into hypermobile EDS (hEDS) and HSD, and 2022 will see a collaborative study looking to understand the EDS, POTS, and Mast Cell Activation Syndrome (MCAS) trifecta.  

We are delighted to announce, and thankful to the community, for 1000 individuals with hEDS now enrolled in the Hypermobile Genetic Evaluation (HEDGE) study! Sequencing has begun at The Broad Institute at MIT and Harvard as we continue on our discovery for the genetic markers behind hEDS! 

I don’t know what we would have done without your organization having information ready to go to a doctor when we suspected hEDS. We got through diagnosis for hEDS, then POTS, now suspected MCAS. To know there is money going into funding research means the world to us.” ~ Laura 

In 2022, The Ehlers-Danlos Society is committed to increasing the availability of clinical services for people living with EDS and HSD, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD.

Toward that end, our aim is to develop a network of Excellence for EDS and HSD around the globe. This will be a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide, and alleviate their pain and symptoms.

Give Today

Every gift counts. 

Together, we can advance education, research, and care for people and families living with EDS and HSD, worldwide. 

Our strength begins with hope, our hope begins with YOU. 

United States
As a 501c3 organization, your donation is a tax-deductible charitable contribution to the extent allowed by the law. EIN# 38-2813140. To donate by mail, send a check (payable to The Ehlers-Danlos Society) to 1732 1st Ave. #20373; New York, NY 10128; USA.

United Kingdom
As a registered charity in England and Wales (1180984), your donation is eligible for Gift Aid to the extent allowed by the law. Companies House Number 10722868. To donate by mail, send a cheque (payable to The Ehlers-Danlos Society) to Office 7; 35-37 Ludgate Hill; London, EC4M 7JN; UK. To donate from UK/EU online click/tap here.

The Ehlers-Danlos Society uses The Network for Good platform to receive online donations and their details will appear on your credit card statement following a donation to our organization. Network for Good’s Donor Advised Fund is an accredited charity by the Better Business Bureau. At the current time, we are unable to accept donations from persons located in Mississippi.