Professor Lara Bloom

President & CEO @TheEDSociety•Prof of Practice Patient Engagement & Global Collaboration•Rare & Chronic Disease Advocate•🏳️‍🌈Gay•She/Her• Views my own

[Professor Lara Bloom @LaraBloom]

I am very rarely on this platform anymore. If you want to connect reach out to me on email or on Instagram 🙏🏼:

https://t.co/V39ptWMMui

[Professor Lara Bloom @LaraBloom]

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 chairs on the room to sit on, wires everywhere that are not complient with health and safety… Being at the @WHO you would hope for more…

This is NOT enabling #socialparticipation

[IAPO @IAPOvoice]

We are excited to see you today at @IAPOvoice 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 👉 https://t.co/QRMDtlfUvP

[The Ehlers-Danlos Society @TheEDSociety]

🧬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 Hypermobility Spectrum Disorders (IC) is now embarking on The Road to 2026.

🔍What is The Road to 2026?

The Road to 2026 is the path and process to updating the 2017 International Classification of the Ehlers-Danlos syndromes. The goal? To deepen our understanding and improve the management of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) worldwide.

🌍This means faster diagnoses, better care, and more informed treatments for our community. This work is anticipated to be completed and published in late 2026.

🗣️Your Voice Matters:

Your voice, your experience, and your journey matter. The Ehlers-Danlos Society will ensure a diverse range of community voices are collected and integrated into this research process to highlight systemic issues and reflect the lived experiences of our community globally.

💭Learn more about The Road to 2026 and share your voice through the community feedback form, now available in nine languages:

English: https://t.co/GO3Jb7SATL
عربي: https://t.co/NK6aa6Dbzz
Deutsch: https://t.co/9O71FJkn4Y
Español: https://t.co/GKhfItWX97
Français: https://t.co/P4ugO6eG2u
Italiano: https://t.co/llFjSIzPAz
日本語: https://t.co/7OoJklSjXi
Nederlands: https://t.co/lF1A6WjxJz
Português: https://t.co/On8P0QofWb
Svenska: https://t.co/scaDLslwxv

#EhlersDanlos #EhlersDanlosSyndrome #Hypermobility #HypermobilitySyndrome #HypermobilitySpectrumDisorder #HSD #EDS #ZebraStrong #sindromedeehlersdanlos #sed

[Professor Lara Bloom @LaraBloom]

I’m so happy that the dots were finally connected for your wife. @TheEDSociety we’re funding research to identify the genetic & metabolic causes of hEDS & develop therapies, & through EDS ECHO our educational program for health professionals. The multi-systemic complex nature of hEDS is still misunderstood & there is a vital need for an interdisciplinary team approach to care - we would love to connect with you about AGI

[Greg Brockman @gdb]

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 Ehlers-Danlos Syndrome (hEDS).

Because the medical system is designed for individual specialties while hEDS affects every system in her body (orthopedics, cardiology, neurology, gastroenterology, dermatology, etc), we spent five years seeing more doctors and specialists than in her whole life prior. Most doctors would only focus on what was relevant to their own specialty. We were lucky that her allergist (!!) put together the pieces after observing and hearing her full set of symptoms and issues.

As human medicine has progressed, it seems like we increase doctors’ depth at the expense of breadth. We need better tools to be able to deliver depth and breadth simultaneously to patients. This is one promise of AGI if built right — reliable, individualized, affordable healthcare in your pocket, like a panel of today’s top doctors across every speciality working together in concert to keep you healthy (and without you needing to fax forms between them).

There’s still a long way to go on the technology and on learning how to deploy it beneficially along with appropriate professional human oversight in high-stakes areas like medicine, but the promise is getting increasingly clear. Thoughtfully approached by technology developers, healthcare providers, governments, and society, there’s hope for much better care for every member of all of our families (including our non-human furry ones).

[The Ehlers-Danlos Society @TheEDSociety]

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.

[Professor Lara Bloom @LaraBloom]

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

[Professor Lara Bloom @LaraBloom]

Excited to be speaking today at the #RareShowcase23 about how impactful @ProjectECHO can be for #RareDiseases using @TheEDSociety EDS ECHO as a case study

[Professor Lara Bloom @LaraBloom]

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

https://t.co/VY2AIkeJf7

[Professor Lara Bloom @LaraBloom]

@ForwardRolling @TheEDSociety Email us! [email protected]

[Professor Lara Bloom @LaraBloom]

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 🫶🏻@TheEDSociety

[Professor Lara Bloom @LaraBloom]

Thank you to all those who took part in the @TheEDSociety Externally Led Patient Focused Drug Development meeting with the @US_FDA whether you were with us in the room, or one of the 500 people who joined us virtually from around the world 🙏🏼

[Professor Lara Bloom @LaraBloom]

@MedicallyGaslit Hey! Please reach out to us at [email protected] and we can provide lots of info and support ❤️

[Professor Lara Bloom @LaraBloom]

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!!

[Professor Lara Bloom @LaraBloom]

So looking forward to speaking at the @RareBeacon #RareShowcase23 next month! @TheEDSociety

[Professor Lara Bloom @LaraBloom]

Back at the studio for the last @TheEDSociety EDS ECHO summit of the year! This one is all about fatigue 💫 #EDS #HSD #EhlersDanlosSyndrome

[Professor Lara Bloom @LaraBloom]

I could not be prouder of our @TheEDSociety team! Out of thousands of @ProjectECHO 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 beyond!!!

[The Ehlers-Danlos Society @TheEDSociety]

.@TheEDSociety’s EDS ECHO program is proud to have been awarded an ECHO Excellence Award at the @ProjectECHO MetaECHO® conference in Albuquerque, New Mexico this week! Read all about it: https://t.co/FTdMh9GzuF #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #MetaECHO2023

[Genetic Alliance UK @GeneticAll_UK]

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: https://t.co/ikonhPoDnn