With your support of our shared mission, The Ehlers-Danlos Society has made great strides in 2019. Our goals are world-wide awareness — and a better quality of life for all who suffer from these conditions, and we are closer than ever before to making this a reality.
Collaborative research paves the way to progression.
Research is at the center of what we do, so that one day we will have a cure. In 2018 we began awarding research grants and to date The Society has given $700,000 in scientific research grants for EDS and HSD. An additional $2 million has been provided to support the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study, to find the genetic causes behind hypermobile EDS.
Our goal is to ensure consistent and groundbreaking research into these conditions to help individuals worldwide who live with these conditions. The Society recently announced a new $1 million gift which has set the foundation for our Research Roadmap. The Research Roadmap was developed in collaboration with The International Consortium on EDS and HSD and presents a long-term action plan for the prioritization of EDS and HSD as focal points for research worldwide, providing opportunities to enhance the speed and effectiveness of research. The Ehlers-Danlos Society aims to offer grants on an annual basis and needs continued support to make this plan a reality.
The Comorbidity Coalition, a multi-faceted stakeholder group of lay and professional members, was created in 2018 thanks to a PCORI grant, and the group has been able to continue throughout 2019 thanks to a generous donor. The Coalition has worked in the past year to generate a list of lay support and informational guides on living with EDS and HSD. These will be added for publication on The Society’s new website, coming soon. The Coalition will work in 2020 towards helping the Society develop accredited medical guidelines for an EDS diagnostic pathway, obstetrics, and gastrointestinal failure.
The Ehlers-Danlos Society also proudly launched the EDS and HSD Global Registry in late summer 2018, and we now have close to 8500 participants from 78 countries. This is the first time that there will be the information in one place to help researchers throughout the world to map the experiences of those living with EDS and related disorders, to enable the gene search for hEDS and HSD, to facilitate research into the frequency of related symptoms and conditions, and to discover new forms of EDS and HSD. Participation is free to all, with global access available — no matter where you live — and more languages will be available soon. A huge thank you to every participant who will help researchers to advance our understanding of EDS, HSD, and related symptoms and conditions.
Educating and re-educating to ensure diagnosis and care for all!
Education is essential to advance early diagnosis and intervention, and after diagnosis, patients urgently need support and guidance. For this reason in 2019 The Society was very excited to launch EDS ECHO — a program to educate healthcare professionals across all disciplines, by moving knowledge, not patients. The three initial programs have educated over 270 professionals from 25 countries and EDS ECHO has expanded from two hubs in the US and Europe, adding a third hub in Australia. In 2020 the Society will announce at least three new EDS ECHO programs, focusing on Vascular EDS, orthopedic management, and allied health. The Society hopes to continue expanding to new hubs around the world, please help reach our goal of educating 1000 new experts by 2022 to increase knowledge of EDS and HSD on a global scale by sharing the downloadable flier with your healthcare team and on social media.
This year The Ehlers-Danlos Society produced learning conferences and scientific meetings in Nashville (TN, USA), Madrid (Spain), Edinburgh (United Kingdom), and Tokyo (Japan), educating over 1,700 attendees. The Society’s Junior Zebra program at the US Global Learning Conference experienced continued expansion, growing from 24 attendees in 2018 to 40 in 2019. The program provides a unique opportunity for children ages 7-18 to socialize with others their age and learn important coping skills for mental and physical health.
2019 also saw The Society live-streaming the first ever conference, live from Nashville. Although this is costly, it is something we have wanted to do for a long time to reach as many as possible. Over 3,200 individuals, from 48 countries around the world, tuned in to watch presentations from world-leading experts from their homes, hospital beds and desks at work!
We hope to see you at one of The Society’s 2020 conferences: Paris (France), European Learning Conference; Austria, Research Workshop; Phoenix (AZ, USA), Global Learning Conference; Ohio (USA), vEDS summer camp; Houston (TX, USA) cEDS conference; and Miami (FL, USA) Scientific Meeting on Comorbidities in EDS and HSD either in person — or through live-stream!
In addition to in-person education events, The Society also produced webinars presented by medical professionals from around the globe which include a Q&A portion for the attendees. The Society already has over 25 webinars scheduled for 2020. If you missed a live viewing, all our past webinars are available on The Society’s YouTube channel, along with past conference videos — with more in postproduction to come soon. These videos have been watched over 123,000 times, and The Society is currently working to transcribe, translate, and caption these videos to be fully accessible to all.
Going global — supporting our dazzle all over the world.
Supporting our communities worldwide, and educating health professionals to diagnose, care for, and treat them is at the heart of what we do and in 2019 our community grew substantially. The Society’s Inspire message board grew to over 75,000 members, and the helpline team answered over 2700 helpline emails. In response to this clear need from our community, in the spring of 2019 the Society launched freephone international helpline numbers in 28 countries which have already received over 470 Helpline calls. Ten to fifteen percent of these helpline calls are from medical professionals seeking advice and resources for patients. In an effort to bring support to everyone, The Society also launched several virtual online support groups in 2019 which meet monthly and quarterly to provide support to our virtual and global community. The growth in social media also continues as The Society Facebook nears 86,000 followers, almost 32,000 Instagram followers, and continues growth on Twitter and YouTube also.
Raising awareness on land and at sea!
The Ehlers-Danlos Society consistently strives to increase awareness of EDS, HSD, and related conditions all around the world. In May, 2019 Carnival Cruise Lines honored The Society at their annual naming ceremony providing invaluable publicity through Carnival’s media outlets. Throughout 2019 several celebrities shared that they have EDS, we are so grateful for their bravery sharing their stories which elevated the public’s awareness of these conditions. Thanks to Sia, Jameela Jamil, Baroness Nicola Blackwood, Lena Dunham, Yvie Oddly, and Sophie Hulme for proudly joining our Zebra Dazzle and spreading EDS awareness with their fans around the world.
May is officially Awareness Month, and in 2019 local advocates submitted Awareness Proclamations in over 30 US States and in four additional countries. Supporters also hosted and attended countless local community events in zebra stripes and started almost 500 online fundraisers raising over $150,000. Help spread awareness in your local and social communities by starting a fundraiser or advocating at a local event, any time of the year, anywhere in the world. Printable and digital awareness and advocacy materials are available on our website.
Looking forward to a positive future for our community…
Each gift strengthens research, education, advocacy, awareness, and support — worldwide.
Together, we can continue to advance knowledge, research, awareness, education, and support for all those living with EDS, HSD, and related conditions everywhere around the world. The new decade will bring more global events, translated materials into multiple languages, a brand new accessible website, more research grants than ever before, more educational efforts with EDS ECHO, more virtual support in the form of webinars and support groups and live streaming — all taking us closer than ever before to a time when geography and wealth no longer determine your quality of life. A time when diagnosis comes when symptoms begin, not decades later. Our community deserves so much, and The Society is here to ensure they get it. This cannot be done without you, and we are so grateful for your support in making this possible.