The Ehlers-Danlos Society

Colorful promotional graphic for The Ehlers-Danlos Society Female Health Summit virtual conference. The design features soft pastel shapes and icons on a light gradient background. At the top, the Ehlers-Danlos Society logo appears above the large headline “Female Health Summit,” with the subtitle “Virtual Conference for Community Members and Healthcare Professionals.” Centered text reads “1 WEEK TO GO” in large bold letters. Along the bottom, a dark blue banner lists event details: “Saturday, March 7, 2026,” “8:45 AM – 5:30 PM EDT,” and “Online Webinar,” accompanied by small calendar, clock, and computer icons.

Have you got your ticket for the #FemaleHealth Summit? It's coming up fast on March 7, and we have some incredible speakers joining us across a breadth of topics: www.ehlers-danlos.com/female-healt... #EhlersDanlossyndrome #HypermobilitySpectrumDisorder

More Awareness for cEDS is our Lifelong Goal for Miles - The Ehlers Danlos Society Miles was born at 36 weeks, after suffering from preterm premature rupture of membranes (PPROM) at 30 weeks. He had noticeably turned in feet at birth but otherwise seemed well.

"When Miles was a few months old, worrying signs started to appear, such as severe bruising on his arms and legs, nose bleeds, and sleeping almost 24 hours a day. He was diagnosed with #ClassicalEhlersDanlosSyndrome at 2 years old." www.ehlers-danlos.com/story/miles-l/

Inside the CORE Network: A Visit to NYIT’s EDS/Hypermobility Treatment Center - The Ehlers Danlos Society Last week, Lara Bloom, President and CEO of The Ehlers-Danlos Society, visited the NYIT EDS/Hypermobility Treatment Center while on a trip to New York, a member of our global CORE Network of Excellenc...

Lara Bloom, President and CEO of The Ehlers-Danlos Society, visited the NYIT EDS/Hypermobility Treatment Center while on a trip to New York, a member of our global CORE Network of Excellence: www.ehlers-danlos.com/inside-the-c...

Hi Sharon, are you looking for a diagnosis?

This anniversary is a celebration, but also a promise to keep pushing forward.

For faster diagnosis.

For better care.

For real progress.

Here’s to the next decade.

A decade on, we have been able to educate thousands of healthcare professionals, support innovative research, develop worldwide care networks, and bring our community together.

The Ehlers-Danlos Society Celebrates a Decade of Worldwide Reach and Impact - The Ehlers Danlos Society

The Ehlers-Danlos Society began 2016 as a global organization with one common goal: to change the future for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). www.ehlers-danlos.com/the-ehlers-d...

Some features are seen across all types of EDS, including #jointhypermobility, skin hyperextensibility, and tissue fragility.

Here, Dr. Clair Francomano explains more about the different types of #EDS.

13 EDS Types Explained: Symptoms, Genetics, and Key Differences YouTube video by Doctor Clair

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. Each type has its own set of features with distinct diagnostic criteria. youtu.be/w62qVQvznYM?...

Applications are now open: www.ehlers-danlos.com/eds-echo-hea... #advocacy #ehlersdanlossyndrome #hypermobilityspectrumdisorder

This program equips participants with essential skills, tools, and experience, allowing them to support others in effectively navigating the healthcare system and life, and advocating for better care of people with EDS and HSD.

Banner for health advocacy featuring the Ehlers-Danlos Society ECHO and Project ECHO logos on the left, the headline “HEALTH ADVOCACY” across the center, and a photo on the right of diverse people stacking their hands together in a gesture of unity and support. Text at the bottom reads “Improving care in EDS & HSD.”

The  EDS ECHO Health Advocacy Program  is a virtual program designed for health advocates who are committed to helping people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

How Doctors Diagnose Ehlers-Danlos Without Genetic Testing YouTube video by Doctor Clair

Dr. Clair Francomano explains the clinical examination process and diagnostic criteria for identifying hypermobile Ehlers-Danlos syndrome (hEDS) youtu.be/a9nLUwZNdbY?...

#hypermobility #hypermobileeds #EhlersDanlosSyndrome

Request Your Fundraising Pack - The Ehlers Danlos Society

🟣Request a fundraising pack: www.ehlers-danlos.com/fundraising/...

#TogetherWeDazzle #ZebraStrong #GivingTuesday

🟣See if your employer will match your donation! Check using our special Double Donation tool at www.ehlers-danlos.com/donate/globa...

🟣Start a Facebook Fundraiser: www.facebook.com/fund/ehlers....

✨Donations made this Giving Tuesday and before December 31st, will be DOUBLED!

Every donation will help advance Care, Access, Research, and Education for people impacted by EDS and HSD worldwide.

(Here's how you can give hope this Giving Tuesday!)

🟣Make a donation www.ehlers-danlos.com/donate/

“Promotional graphic for The Ehlers-Danlos Society’s Giving Tuesday campaign. Text reads: ‘Giving Tuesday – December 2, 2025 – Two Weeks To Go!’ A stylized zebra heart replaces the ‘V’ in ‘Giving.’ On the right, a smiling woman holds a young child who has their arms around her. The background is white and purple with soft decorative shapes.”

💜December 2nd is Giving Tuesday, & your gifts will have double the impact!

We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!

Why My Oscar Follow-Up Is Premiering on YouTube After an Oscar nom for short "Chau, Beyond the Lines," filmmaker Courtney Marsh aimed for feature debut. But what about getting it in front of people?

On @indiewire.com, Courtney Marsh talks about releasing Where Did the Adults Go? for free on YouTube after 40+ film festival and distributor rejections – also ensuring that it reached the communities it represents by partnering with @ehlersdanlos.bsky.social.
#indie #indiefilm #indiefilmmaker #film

What You Need to Know About Classical EDS YouTube video by Doctor Clair

Today's video from Doctor Clair Francomano explains the key features of classical Ehlers-Danlos syndrome, including joint hypermobility, skin hyperextensibility (stretchy skin), and skin fragility. youtu.be/vohXwTqfRUU?...

#cEDS #ClassicalEDS #EhlersDanlosSyndrome #HealthProfessionals #Medicine

Caring for Someone with EDS or HSD - The Ehlers Danlos Society

Do you have a loved one who lives with EDS + are their carer? Give this article from @ehlersdanlos.bsky.social a read 📖
Caregivers, please make sure to take care of yourself 🩵🦓🩵
#EDS #hEDS #ehlersdanlossyndrome #ehlersdanlos #chronicillness

🤘 Meeting cool people with EDS/hEDS in Michigan and am super excited to start making connections with people in my new state!

You ARE worth more than you do.
Your worth is INNATE and NOT connected to your productivity!

#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

If you can jump into this event today it has been FANTASTIC. I highly recommend it.

View the event agenda here and see today's topics and speakers: www.ehlers-danlos.com/wp-content/u...

#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

🎫There is still time to join today's event! We also have a ticket option to purchase the event recordings, which will be sent to ticket holders tomorrow.

You can learn more here about ticket options here: www.ehlers-danlos.com/eds-echo-sum...

– Australia, Belgium, Brazil, Canada, Chile, El Salvador, Finland, France, Germany, Guatemala, India, Ireland, Italy, Japan, Mexico, The Netherlands, New Zealand, Poland, South Africa, Spain, Sweden, Switzerland, Turkey, UK, USA.

EDS ECHO Summit on Mental Health recordings. Virtual conference for community members and healthcare professionals. Includes Ehlers-Danlos Society ECHO and Project ECHO logos.

🧠💗Today is the EDS ECHO Summit: Mental Health virtual event!

🌎We are joined by 431 attendees, including 228 healthcare professionals, representing 25 countries [Thread]

Hedge Study Update - The Ehlers Danlos Society

The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study continues to advance understanding of #hypermobileEhlersDanlossyndrome ( #hEDS) and #hypermobilityspectrumdisorder ( #HSD). Read the latest update & key findings! www.ehlers-danlos.com/hedge-study-...

Just over 1 week to go until the @ehlersdanlos.bsky.social Society EDS ECHO Summit: Mental Health!
With our chair @jgjanegreenmbe.bsky.social
⁠
🎟️ Register now (or apply for a scholarship) at www.ehlers-danlos.com/eds-echo-sum... “

2023 Living with hEDS and HSD: POTS - Francie Fitzgerald YouTube video by The Ehlers-Danlos Society

Francie Fitzgerald speaks on the experience of living with #hypermobileEhlersDanlossyndrome (hEDS) and #POTS for the past 13 years; highlighting the diagnostic odyssey and the arduous process of finding effective treatments. youtu.be/Qa-dfd2Nl2k?...