🧬Progress Driven by Research!

Empowered with the latest research, worldwide clinical and patient experience, and through engagement with health professionals and our community, an expert committee from the International Consortium on the Ehlers-Danlos Syndromes and

A reason we need beneficial AGI:

After five years of pain across many systems in her body (a broken foot from stepping off a curb, debilitating migraines, fatigue, joint pain and instability, etc), my wife was recently diagnosed with a genetic disorder called Hypermobile

We are delighted to announce a $2.375 million pledge from InVitro Cell Research, LLC (ICR) for research in hypermobile Ehlers-Danlos syndrome (hEDS). ICR is a privately funded regenerative medicine research company that is funding proteomics and metabolomics research in hEDS.

Proud to serve on the board of Genetic Alliance UK and I’m excited to be spending the next two days with them in meetings 🙌🏻

Excited to be speaking today at the #RareShowcase23 about how impactful Project ECHO can be for #RareDiseases using The Ehlers-Danlos Society EDS ECHO as a case study

Latest VLOG is now live! Madonna, Pumpkins and everything in between…

youtu.be/folgMZ0Ntsg?fe…

Team zebra working hard at our retreat plotting out the year ahead. Each flip chart represents a month, and each sticker colour represents a department. A mammoth amount of work goes into delivering our mission. So proud of our team 🫶🏻The Ehlers-Danlos Society

Thank you to all those who took part in the The Ehlers-Danlos Society Externally Led Patient Focused Drug Development meeting with the U.S. FDA whether you were with us in the room, or one of the 500 people who joined us virtually from around the world 🙏🏼

So looking forward to speaking at the Beacon for Rare Diseases #RareShowcase23 next month! The Ehlers-Danlos Society

Traveling with a baby means a whole lotta luggage! 3 weeks away for work, very grateful my wife and daughter are with me - DC, Baltimore, NYC, Hershey here we come!!

Back at the studio for the last The Ehlers-Danlos Society EDS ECHO summit of the year! This one is all about fatigue 💫 #EDS #HSD #EhlersDanlosSyndrome

I could not be prouder of our The Ehlers-Danlos Society team! Out of thousands of Project ECHO programs, only 12 were chosen for an award - and we were one of them!! So much collaboration, hard work and vision has gone into EDS ECHO over the last 5 years , here’s to the next 5 years and

What are the CONCORD study findings?

A short animation summarising the CONCORD findings was released for Rare Disease Day 2023. You can watch it here: ow.ly/wPIt50OFNlC

Sharing our experiences of EDS ECHO today on a plenary panel at #MetaECHO2023 #RareDisease #EhlersDanlosSyndrome #HSD #EDS

I am so excited to be at the @projectechohq conference - #metaecho2023 - sharing the huge success of the The Ehlers-Danlos Society EDS ECHO.

Project ECHO is an innovative program designed to create virtual groups of learners by bringing together healthcare providers, subject matter experts,

'Are You Choking? Throat Problems and Care in Ehlers-Danlos Syndromes and Hypermobility' with Prof. Martin Birchall - Now available to watch on YouTube.

Watch here: youtu.be/da0r6HZ7qHs?si… #PainMonth #EhlersDanlosSyndrome #Hypermobility

Very proud to be presenting a poster on #EDSECHO on behalf of the The Ehlers-Danlos Society at #MetaECHO2023

I’m disappointed americanair - I am a very frequent flyer & as someone who doesn’t eat meat, egg or dairy, I ordered the vegan meal ahead of time for my almost 10hr flight today. My MAIN meal was fruit & oatmeal. I think in 2023 you can do better, MUCH better for your #vegan