Thank you! It’s a wrap: Our 2017 review

THANK YOU!

With the help of our friends, volunteers, donors, and professionals, 2017 was our most productive year ever. We broke new ground through increasingly global collaborative research, education, and awareness, we are making persistent progress towards better diagnosis, treatment, and care.

Together, this is what we achieved 2017:

MAJOR ADVANCES IN RECOGNITION AND UNDERSTANDING

  • Dramatically improved global recognition of the Ehlers-Danlos syndromes and hypermobility spectrum disorders by medical professionals through publication of a 245-page supplement to The American Journal of Genetics of the most far-reaching and authoritative anthology of Ehlers-Danlos research articles in more than three decades.
  • Development and publication of “The 2017 International Classification of the Ehlers–Danlos Syndromes,” the most concise, consistent, and comprehensive diagnostic criteria for the Ehlers-
    Danlos syndromes and the newly-established hypermobility spectrum disorders ever produced.

BETTER TREATMENT AND CARE

  • Produced the first consistent internationally recognized treatment and care guidelines for the health issues and comorbidities, which often accompany Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
  • Established a new coalition to set global priorities for further research into these comorbidities through a prestigious grant from the Patient-Centered Outcomes Research Institute (PCORI).
  • Funding for exciting research into how diet might alleviate symptoms of EDS and HSD.
  • Expansion of research, diagnosis, and patient care through The Ehlers-Danlos Society Center for EDS Research and Clinical Care at Greater Baltimore Medical Center’s (GBMC) Harvey Institute for Human Genetics.

ENHANCED AWARENESS, EDUCATION, AND COMMUNITY

  • Ever-expanding, global online presence and awareness, with over 1 million monthly visitors to Ehlers-Danlos.com, top placement on Google searches, rapidly growing international support
    community reaching and answering thousands EDS, HSD, and related questions for nearly 60,000 members on Facebook and Inspire.com.
  • Providing awareness, education, and social support opportunities at our Global Learning Conference in Las Vegas with over 600 attendees, presentations by 25 world authorities on EDS/HSD and related disorders, and continuing medical education credits for at least 50 medical professionals.
  • Established new relationships and educating professionals throughout other related medical communities, including the United European Gastroenterology Conference, the International Pain Conference, Genetic Alliance, Rare Diseases International, and The European Patients Academy (EUPATI) events—and our first global conference in India.
  • Live broadcasting to nearly 200,000 patients, caregivers, and health professionals worldwide of press conference and webinar introducing the new international guidelines for the diagnosis of EDS and HSD.
  • Representation and advocacy for the Ehlers-Danlos community to the US and UK governments on issues ranging from chronic pain and opioid access to funding for rare disease research.

WORKING TOWARDS A BETTER FUTURE THROUGH RESEARCH

  • Participation in prestigious genetic research projects in the UK and the USA.
  • Setting out the guidelines for a global registry as a first step in establishing worldwide EDS/HSD research database.
  • Assisting Genomics England on the EDS panel for the 100,000 Genomes Project which could help identify the genetics behind hypermobile type of EDS.

With your continued help, this is what we can achieve in 2018 and beyond:

BETTER TREATMENT AND CARE

  • Using our prestigious PCORI grant we will continue to establish priorities for further research into accompanying health issues for people living with EDS and HSD.
  • Continued research into how diet might alleviate and potentially eliminate symptoms of EDS and HSD.

EXPANDING AWARENESS, EDUCATION, AND MEDICAL COLLABORATION

  • Hosting The International Symposium on the Ehlers-Danlos Syndromes for researchers and medical professionals in Ghent, Belgium.
  • Holding Ehlers-Danlos Society Learning Conferences for patients and medical professional in Europe, Australia, and the USA.
  • Presenting and exhibiting at related conferences in areas such as physiotherapy, nursing, rheumatology, neurology and pain management.

WORKING TOWARDS A BETTER FUTURE THROUGH RESEARCH

  • Seeking out and supporting cutting-edge genomic research into the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
  • Continuing our work on a global patient registry.
  • Encouraging and inspiring innovative global medical collaboration through micro-grants for initial research.

There is still much more to do!

We are on the brink of taking huge steps forward with our quest to raise awareness, improve diagnosis, treatment and care and work towards finding cures — but we can only do so with
your continued support.

Together, we can help to save lives, alleviate pain, and enhance day-to-day living for those living with Ehlers-Danlos syndromes and hypermobility spectrum disorders worldwide.

Thank you!

Happy Holidays and Very Best Wishes,

THE EHLERS-DANLOS SOCIETY

Our strength begins with hope. Our hope begins with you.

Connect with our global community—today.

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