About Us

Contents About Us – our aims and desires, missions and wants as a patient led group. Advocacy & raising awareness Advocacy & raising awareness (Continued from Page 2) – Including: Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton Is pharma being… Read More About Us

#chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients

Feature: ‘Find Me A Cure’
Very soon FibroFlutters website will have it’s own very unique widget for readers to search for appriate clinical trials for any illness anywhere in the World and Find Me A cure have already sent me some designs to choose from.… Read More #chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients

Lara Bloom has Ehlers-Danlos Syndrome, a genetic connective tissue condition and this is her interview on ‘The Moment’ with Maxine Mawhinney.

International Executive Director Lara Bloom was interviewed recently by “The Moment-with Maxine Mawhinney” raising awareness about EDS/HDS and talking about her moment when she walked the London Marathon in 2011.… Read More Lara Bloom has Ehlers-Danlos Syndrome, a genetic connective tissue condition and this is her interview on ‘The Moment’ with Maxine Mawhinney.

CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!  |  The Ehlers-Danlos Society  |  11 September 2018

September is Pain Awareness Month

90% of EDS patients live with some form of pain, but all experience this pain in a different way. Follow us on social media throughout the month for information, discussion, and support on the many aspects of EDS and HSD pain. #myEDSHurts #myHSDHurts
THE EHLERS-DANLOS SOCIETY EDS & RELATED DISORDERS GLOBAL REGISTRY… Read More CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!  |  The Ehlers-Danlos Society  |  11 September 2018

The Ehlers-Danlos Support UK  |  Your weekly update from EDS UK!  | 24 August 2018

Featuring  >>>

Love Amazon? Sign up to Amazon Smile and support EDS UK!
Meet our new Medical Advisory Panel Members
Cheer on our Great North runners!
I cycled 5,000 miles round Britain to beat my illness and found kindness I never knew existed
Kirsty’s Big Fun Run challenge
Ezra the Zebra book coming soon!… Read More The Ehlers-Danlos Support UK  |  Your weekly update from EDS UK!  | 24 August 2018

The Ehlers-Danlos Society | CONNECT: Major research gift, webinars, and more! | 28 August 2018

Are you someone with Ehler’s Danlos Syndrome (EDS), or Hypermobility Spectrum Disorder (HSD) related conditions and living in the US? Visit the The Ehlers-Danlos Society website for information, advice and #patient support via this following link.  You will be able to opt-in for the CONNECT newsletters and gain access to professionals, research, health information, and also others like yourself if you join in.… Read More The Ehlers-Danlos Society | CONNECT: Major research gift, webinars, and more! | 28 August 2018