The Ehlers-Danlos Society
@TheEDSociety
Followers
24K
Following
6K
Statuses
13K
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
New York, USA
Joined June 2009
Important Update: Our X Account Has Closed As part of our ongoing efforts to focus our resources where they can make the greatest impact, The Ehlers-Danlos Society has decided to close our X account. Our mission to support, educate, and empower the EDS and HSD community remains stronger than ever. You can find resources, support services including our helpline and virtual support groups, and the latest updates on our website at To stay connected, share your stories, and continue the conversation, you can find us on: Facebook: Instagram: Bluesky: LinkedIn: YouTube: Threads: @InspireisHealth: Thank you for your continued support, and we look forward to engaging with you on platforms where we can better serve our amazing community. #TogetherWeDazzle #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
5
2
10
@Barnacl3s @pig_witch Where does it hurt? *Scribbles everywhere* But seriously I hope you find it really useful!
1
0
2
RT @IamLittleMax: Happy international day of people with disabilities, you can find me making being disabled look cool (and other amazing h…
0
1
0
Every dollar you donate to @TheEDSociety this #GivingTuesday will make twice the impact and help this critical work in funding research, expanding care, and educating healthcare professionals to continue. Your donation today will directly support research and care that can transform the lives of thousands living with #EhlersDanlosSyndrome (EDS) and #HypermobilitySpectrumDisorder (HSD). Together, we can shorten the wait for a diagnosis and bring hope to families seeking better treatments. Thank you. #TogetherWeDazzle #ZebraStrong
1
0
6
RT @AriA1exander: Every year the NFL has players put a cause and charity on custom cleats, and the Texans are nice enough to let us partici…
0
12
0
@Web4Door Oh I see! Our Development team does reach out to donors and maintain relationships with them, but we always appreciate signposting people to the Society where we can offer support and hopefully partner or cultivate a relationship to support the mission!
0
0
0
@Web4Door Thanks Kim! Which institutions are you referring to, as in what type? Thanks in advance!
1
0
1
There is no pressure for those who can't donate, we completely understand many are struggling. For those who are able to donate we share fundraising ideas to help keep our mission going. Yes we have fundraising mailing lists and work with our development team to raise funds to support our work within the community, with corporate donors, partners, sponsors, and networks.
1
0
1
🌏 #HealthcareProfessionals — Join the 2025 EDS ECHO Multidisciplinary Team Practice Program Australasia! This virtual program is designed for those currently involved in clinical work with #EhlersDanlossyndrome or #hypermobilityspectrumdisorder
0
2
7
Imagine a world where every person living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) receives the care and support they need to thrive. At The Ehlers-Danlos Society, we are committed to making this vision a reality. Right now, a generous donor whose family understands the challenges of these complex conditions, will DOUBLE your donations, to help us raise $400,000 for EDS and HSD! Together we can accelerate vital research, educate health professionals, and support people and families who are struggling. Donations can be made in your chosen currency, or you could also start a fundraiser: Donating the price of a cup of coffee today could help us change lives! ☕🦓 #TogetherWeDazzle #ZebraStrong #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #GivingTuesday
0
12
44
RT @jvsimmonds01: Delighted to be part of the SOSORT webinar today on hypermobility and scoliosis. Greater understanding needed. Fabulous l…
0
2
0
💜 Today is #WorldChildrensDay, and we're delighted to welcome #healthcareprofessionals from all over the world to register for the EDS ECHO #Pediatrics North America program.CME/CEU/CE credits are available to healthcare professionals. Apply at
0
1
6
November 19 is #InternationalMensDay. We spoke to Domenik who volunteers for @TheEDSociety and leads the Let’s Chat Men’s support group, about his own #EhlersDanlosSyndrome journey, and why the men’s group is so important for those impacted by EDS & HSD:
0
3
13