Archives

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 […]
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The EDS International Consortium identifies Common Data Elements as next collaborative goal

The International Consortium on Ehlers-Danlos Syndromes and Related Disorders was created following the 2017 diagnostic criteria and management and care guidelines. The Consortium is an independent group of medical professionals and patient experts committed to progress, research, and collaboration in the field, to work on the many challenges and research questions faced by families, clinicians, […]
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CASTING CALL: Ehlers-Danlos ‘Models’ Wanted!

We are seeking people with EDS or HSD to participate in upcoming photo shoots—and help to tell our stories. People of all ages, races, shapes, sizes, and genders with a confirmed EDS or HSD diagnosis are encouraged to submit headshot/profile photo and full-length photos. We also welcome EDS families for group sessions. The Ehlers-Danlos Society […]
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Pamela Diane (Ferley) Badik

Pamela Diane (Ferley) Badik died on April 12, 2017 in Pasadena, CA surrounded by her family and the staff of Regency Park Astoria Assisted Living and Faith in Angels Hospice. Pam was born to Seymour & Darlene Ferley in Albert Lea, MN on March 28, 1956.  She lived her first nineteen years on a farm near […]
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The 100,000 Genomes Project Releases EDS Gene Panel

The Ehlers-Danlos Society has assisted Genomics England with the EDS gene panel for the 100,000 Genomes Project. The EDS panel has been reviewed by members of the International Consortium for Ehlers-Danlos syndromes and related disorders. The Society were contacted by the team working on the 100,000 Genomes project following the work surrounding the new diagnostic […]
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