'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

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,

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

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

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

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

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!!

So looking forward to speaking at the Beacon for Rare Diseases #RareShowcase23 next month! 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 🙏🏼

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

Latest VLOG is now live! Madonna, Pumpkins and everything in between… youtu.be/folgMZ0Ntsg?fe…

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

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 🙌🏻

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.

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

🧬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

We are excited to see you today at IAPO and The Synergist's side event at #WHA77 to discuss the vital role of patient orgs in delivering #UniversalHealthCoverage! A great start to the discussions ahead of the World Health Assembly! To learn more 👉 bit.ly/3UOMP6m

At a European Observatory on Health Systems and Policies side event - “Moving from Principles to Action on Social Participation for #UHC, #Health, and #WellBeing - great content, great speakers, however the irony is not lost on me on how lacking it is in terms of inclusivity… no