YOUR SUPPORT OF OUR SHARED MISSION HELPED THE EHLERS-DANLOS SOCIETY ACCOMPLISH MORE THAN EVER IN 2020!
As COVID-19 swept across the world, The Ehlers-Danlos Society worked hard to support the community with additional resources, while still keeping sight of our shared mission. Our goals are world-wide awareness — and a better quality of life for all who suffer from EDS or HSD, and together, we are working hard to make this a reality. As everyone’s lives shifted drastically to a more virtual world, The Society used virtual platforms to empower and connect our community around the world!
Going virtual — supporting our dazzle all over the world.
Support programs grew dramatically in 2020 as the global need increased for mental health support, advice on managing symptoms at home, and resources to help navigate a health care system under unprecedented pressures with COVID-19. Let’s Chat support group meetings increased tenfold to offer scheduling suitable for all timezones, and to provide safe spaces for the different challenges the community was facing. New groups were introduced for parents, partners and spouses, young adults, men, and the LGBTQIA+ community.
A dedicated COVID-19 resource hub kept the community updated regularly, in line with the latest research and information relevant to community needs. Allied health professionals from around the world provided webinars and videos, as part of our Movement Webinar Series, to help our community keep moving safely at home. The Global Affiliate Network, which collaborates to provide outreach and programming with regional and local support groups, charities, and societies, grew to nearly 70 members across 13 countries. The Society’s Inspire message board also grew to over 90,000 members. The team answered over 4,000 helpline emails (nearly 50% increase from 2019) and over 600 calls via 28 toll-free international helpline numbers.
Loose Connections, a digital publication of original content from our community, returned in 2020. The three new issues are the largest to date and received the most submissions since its inception in 1986. The Society also launched a Community Voices Page to share community stories in any medium. This is part of the Breaking Down Barriers (BDB) Coalition, a new program to help inform and guide Society programming and advocacy efforts to better address inequalities and access to resources. Additional projects under BDB include translating, transcribing and captioning videos, live chats, and events, providing alternative image text, better representation and additional resources like the new Mental Health Resources Page.
Advocacy and Acts of Awareness go virtual!
The Ehlers-Danlos Society strives to increase awareness of EDS, HSD, and related conditions all around the world. As part of May Awareness Month, Acts of Awareness were carried out all around the world, as the community came together, virtually, to create change. Local advocates submitted more Awareness Proclamations in 58 states, countries, and cities around the world, nearly double from 2019. Supporters went online with fundraisers, hosting gaming streams, virtual quiz nights, and social media events, surpassing 2019 with over $100,000 raised by the community! From our global virtual walk ‘n’ roll to photo-a-day competitions, we saw over 140,000 Acts of Awareness by 376 participants in 21 countries!
The growth in social media also continued as The Society Facebook nears 97,000 followers, almost 43,000 Instagram followers, 13,000 YouTube subscribers and continued growth on Twitter and LinkedIn. In 2020 The Ehlers-Danlos Society attended or presented at over 25 medical and patient conferences, events and government policy meetings across the globe to educate healthcare professionals, government representatives, and the general public about EDS and HSD and to advocate for those with these conditions.
Education to improve quality of life and reduce the time to diagnosis
The Ehlers-Danlos Society celebrated one year of the EDS ECHO program in 2020. EDS ECHO has trained over 525 healthcare professionals and 210 community advocates from nearly 25 nations to date; and is on track to meet the goal of 1000 healthcare professionals joining our programs and clinical network by the end of 2021. EDS ECHO supports clinicians in increasing their knowledge; helps clinicians network with each other to discuss care; increases access to care by increasing the number experienced clinicians, and supports community advocates in raising awareness of EDS and HSD. In 2020 EDS ECHO added a vEDS ECHO; an Allied Health Professionals ECHO from three hubs around the world; a Nurses ECHO; and a Pediatrics ECHO. In 2021 The Society will introduce EDS ECHO programs for orthopedics, and for other rarer types of EDS.
The Ehlers-Danlos Society in October hosted its first EDS ECHO Summit: A Virtual Scientific Meeting on EDS, HSD, and Comorbidities, sharing the latest research and knowledge with health professionals globally, through the traditional Project ECHO® all-teach all-learn format. The EDS ECHO Summit will run between the in-person International Symposiums held every three years. The Summit explored the most up-to-date knowledge of, and research into, the association, causation, and management of comorbidities seen in EDS and HSD, and was the Society’s most-attended event for health and social care practitioners with 316 professionals attending from 23 countries! Project ECHO® enabled participating physicians to claim continuing education credits.
The Society’s first Virtual Summer Conference saw presentations from 40 health professionals delivered to over 1,600 community members/households in 41 countries, live translated into four languages over three days! One day was dedicated to the rarer types of Ehlers-Danlos syndromes and featured a new Community Voices segment. Miss America, Camille Schrier joined for a special Q&A, and our community show went virtual with Zebras Got Talent! Making conferences and resources more accessible worldwide is a long-term goal, and all 2021 events will be live translated into four additional languages, including Arabic, French, German, Spanish, Italian, Portuguese, Japanese, Mandarin, and Hindi. The Society’s 2021 virtual conference schedule is available on our website.
The Society also produced 19 webinars this year featuring topics such as mast cell, managing pain, Welcome to EDS 101, autonomic dysfunction, and GI/diet. All our past webinars and conference videos are available on The Society’s YouTube channel and have been watched over 731,000 times. The Society is working to transcribe, translate, and caption these to be fully accessible to all.
Breaking down barriers in research for our future
Research is at the center of what we do, so that one day we will have a cure. Our goal is to ensure consistent and groundbreaking research into these conditions to help individuals worldwide who live with these conditions. The Ehlers-Danlos Society, in collaboration with The EDS and HSD International Consortium, developed a research roadmap, and addressing these research priorities will lead to improving the lives of all those impacted by EDS and HSD, and to a better understanding for healthcare professionals, providers, and the economies it impacts. The Ehlers-Danlos Society aims to offer grants on an annual basis. Since 2018 The Society has given $1,080,000 in scientific research grants to date, with $720,000 awarded in 2020. For more information on Society research grants to be funded in 2021, please visit our website. In addition, $2 million has been pledged to support the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study.
The Ehlers-Danlos Society announced a new screening and enrollment process for the HEDGE study in 2020. The new process makes it possible for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) to enroll without traveling to an in-person event. The HEDGE study is an ongoing research project to obtain whole-genome sequences for 1000 people with hEDS under the 2017 criteria, and to seek the underlying genetic causation.
Of the 14 subtypes of EDS, only the hypermobile type does not yet have identified genetic markers. Identifying the underlying genes for hEDS can create vital opportunities for earlier diagnosis, and more comprehensive treatment and care. Screening events have enrolled almost 500 individuals from around the world. Under the new enrollment system, invitees can now have blood drawn at home or at other locations.
Almost 11,000 individuals from 82 countries around the world have joined the EDS and HSD Global Registry. Participation is free to all, with global access available — and more languages available soon!
The Comorbidity Coalition, a multi-faceted stakeholder group of lay and professional members, focused on the development of information guides for 2019-2020. The initial topics are Emergency Room Attendance, Fatigue, Headache, Pain Management, and Travel. In addition, the Coalition has identified a need to publish formal peer-reviewed “Accredited Guidelines” that would be recognized by professionals and professional organizations internationally. The first of these are Diagnostic Pathways for EDS; Pregnancy in EDS and HSD; and Gastrointestinal disorders in EDS and HSD.
Looking forward to a positive future
Each gift strengthens research, education, awareness, and advocacy and support — worldwide. Our community is resilient, strong, and passionate: everyone came together in 2020 to create global change together. The Ehlers-Danlos Society believes where there is a challenge, there is an opportunity to learn and grow. Together, we will continue to pursue our shared mission, and to support our community through these hard times. Your donations drive forward our common goals, helping to reach more parts of the world, impacting the lives of millions affected by EDS and HSD, and enabling programs to adapt to increase access to education and support. One person alone can shine, but together we dazzle.
We are happy to be able to receive donations from all over the world and solicit funds in the US states of WA, ID, NV, UT, AZ, WY, MT, ND, SD, NE, OK, TX, IA, MO, LA, SC, DE, RI, VT, and ME.