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
Feature: ‘Find Me A Cure’
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.
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
Wear Jeans, Change Lives on September 21st
Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.… Read More The Ehlers-Danlos Support UK Campaign Newsletter ~ Are you ready for Jeans for Genes Day?
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
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
The Patient Registry Daily News & more on patient registries and their impact on healthcare today
We’re helping patient registries and administrators of clinical trials bridge the patient-outcome knowledge gap through the power of voice.… Read More My favourite Health related Paper.Li newsletters| Self-Updating | fibrofly73
The Friend Who Keeps Me Going When My Body Won’t Go Anymore – Lisa T
The Only Body I Have – Shannon B… Read More CONNECT ~ The Ehlers-Danlos Society International Newsletter | MCAS Webinar, Amazon Smile, and More! | 8 July 2018
NOW AVAILABLE: EMJ 3.2 JUNE 2018 10th issue via this link >>>
EMJ 3.2 Now Available!… Read More My favourite Health related Paper.Li newsletters| Self-Updating | fibrofly73
“Talking is very beneficial as it helps members to also learn about their conditions and also where to find specified help and resources. Sometimes just knowing you’re not the only one can mean the World when times are so difficult.” #PatientGroupLeader #PatientVoice #MentalHealth
Thoughts by Carole Sian ~ FibroFlutters regarding support groups >>>… Read More The Power Of A Support Group | John Kaniecki | PLUS… ‘Thoughts regarding support groups’ by Carole Sian ~ FibroFlutters CEO