At The Ehlers-Danlos Society we C.A.R.E. – We are driving forward Care, Access, Research, and Education, and are committed to changing the lives of people impacted by the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) – but we need your help more than ever. Watch our 2022 video recap below on progress this year and our goals for 2023.
Together We Dazzle!
Your donations will:
Provide life-changing support group and helpline services
This year we heard through our support groups and helpline how much people are struggling, so we offered even more virtual support groups and introduced new groups for kids and teens aged 6–12 and 13–17.
Let’s Chat groups have connected people worldwide to peer support and community, and many are meeting someone else with EDS or HSD for the first time. They are a true lifeline for so many.
Our helpline team welcomed a new member to meet increased demands on its service, and to continue providing email and telephone support to those in desperate need.
“Thank you for advocating for us, for speaking out for those of us who are not heard, for helping us understand what we are going through, and for being there when we have questions our medical team does not know how to answer.” ~ Helpline user
“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
“As someone newly diagnosed, I find the virtual support groups so helpful and comforting.” ~ Support group attendee
Fund $1 million in research grants to accelerate pioneering research
We support the development of effective and equitable EDS and HSD therapies, and our goal is to ensure consistent and ground-breaking research into the complexities of these conditions.
We need to understand the best ways to treat symptoms, how the conditions develop and progress over time, the genetic causes behind hypermobile EDS and hypermobility spectrum disorders, the prevalence of all types of EDS and HSD, and the association between EDS, HSD, and conditions such as postural orthostatic tachycardia syndrome and mast cell activation syndrome.
By funding researchers, we can support them to reveal vital clues to beat EDS and HSD and improve quality of life for all. Your donation will accelerate ground-breaking research and help us to bring about the first life-changing EDS and HSD treatments.
Increase the availability of clinical services and access to management
The Ehlers-Danlos Society is working to develop a program of Centers and Networks of Excellence for EDS and HSD around the globe, so that no matter where you live, you have access to a multidisciplinary team approach.
The goal is long-term care, for both the physical and the psychological aspects of living with these conditions. Both are essential to ensure that people living with EDS and HSD are offered the best chance at a good quality of life that everyone so richly deserves.
“We know that is more than diagnosis and tests, it’s the language used, it’s the tone. It’s about someone feeling believed and validated.” Lara Bloom, President, and CEO, The Ehlers-Danlos Society.
This year, 27 new Global Affiliates joined our program for progress as we join forces and work collaboratively to improve the lives of individuals around the world.
Provide world-class educational programs for health professionals
EDS ECHO is a virtual program from The Ehlers-Danlos Society that helps health professionals worldwide to improve their knowledge of EDS and HSD, and better care for individuals living with these complex conditions. Continuing Educational credits are available to attendees.
1100 healthcare professionals have now joined EDS ECHO, dedicated to diagnosing and supporting patients!
We have excellent feedback on how the program is supporting their practice:
“EDS ECHO will make me think more about the ways various conditions encroach on patients’ lives and how very important it is to see that individual — as an individual that may have many complex conditions at the same time. “
“I have a lot more tools and knowledge to use when helping patients when navigating work and school needs and disability.”
“I am now more aware of the different sources of pain and barriers to treatment; I am now more confident in assessing this and attending to it.”
Every gift counts.
Together, we can advance care, access, research, and education for people and families living with EDS and HSD, worldwide.
Our strength begins with hope, our hope begins with YOU.
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 447 Broadway, 2nd FL #670, New York, NY 10013; USA.
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.