Together We Dazzle!
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.
With Giving Tuesday just around the corner, we’re gearing up for an extraordinary day of impact on November 28th – a global celebration of generosity that truly changes lives.
Double Your Impact with the Holiday Matching Grant Challenge! We’re thrilled to share that, until January 31st, an anonymous donor (whose family understands the journey of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will match your donations up to $300,000. Your support now means double the progress!
First 125 Donors Get Exclusive Merchandise For our early birds: Be one of the first 125 to contribute $25, and you’ll receive a limited-edition Ehlers-Danlos Society lapel pin – a symbol of your crucial role in our mission.
Drive Pioneering Research and Education Your commitment fuels groundbreaking research and education to improve care for those navigating EDS and HSD. Let’s unite this Giving Tuesday to push boundaries and create lasting change!
Ready to be a catalyst for transformation? Mark your calendar for November 28th, and let’s rewrite futures together. Your generosity is the spark we need!
Your donations will:
Provide life-changing support group and helpline services
Let’s Chat groups connect people worldwide to peer support and community, and many meet someone else with EDS or HSD for the first time. They are a true lifeline for so many.
Our helpline team faces increased demands on its service and continues providing email and telephone support to those in desperate need all around the world. 10-15% of calls are from health professionals looking to help their patients.
“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 every year
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
This year we set the foundations of a global network of Centers of Excellence for EDS and HSD. The first cohort includes 18 Centers and Networks from six countries; Australia, France, Germany, Italy, the United Kingdom, United States, comprised of 30 total institutions and more than 30 areas of expertise.
Together, they make a crucial step towards achieving our mission of increasing the availability of clinical services, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD.
Empower health professionals to provide better care through EDS ECHO
Already, 1,500 health professionals from 43 countries have joined our EDS ECHO educational program, dedicated to diagnosing and supporting patients. Their increased knowledge and empathy equip them to navigate the complexities of patients’ lives, providing improved care and treatment.
Our 2023 survey showed 50% had increased the number of people with EDS and HSD they saw. Of the other 50%, 1/3 were seeing more complex cases.
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. Certain states require written disclosures for nonprofit organizations soliciting contributions. Please click here for individual state disclosures.
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.