The Ehlers-Danlos Society is delighted to launch the new vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS). VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients View page
Last week the Hypermobile EDS Genetic Research Network met at the Annual Society of Human Genetics conference. A truly collaborative and international group, the HEDGE network, consisting of leading authorities in human genetic research, lead the innovative HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) research study. By bringing together these medical experts and through building the HEDGE View page
The Ehlers-Danlos Society is delighted to have held its seventh screening this weekend, for the groundbreaking HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS). Of the subtypes of Ehlers-Danlos syndromes (EDS), only the hypermobile type does not yet have an identified genetic marker. It is also View page
INDIANAPOLIS, USA — The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. A Center for Change The Ehlers-Danlos Society has donated $500,000 View page
Response to British Society for Rheumatology “Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition” June 2019 In June 2019 the British Society for Rheumatology published an update of its 2013 document entitled “Guidance for Management of Symptomatic Hypermobility in View page
Bobby Jones Chiari & Syringomyelia Foundation and The Ehlers-Danlos Society to host “Diagnosis and Management of Syndromes of the Craniocervical Junction and Roundtable Discussion” at The Royal Society of Medicine, London, UK. The situation in the UK for those living with Chiari malformation and cervical instability has been extremely challenging, with delays in diagnosis, lack View page
Celiprolol and vEDS: facts, limitations and recommendations In the context of the recent press about celiprolol and the FDA announcement not to license Celiprolol in the US for use limited to treatment of people with vEDS, we thought that it was time to bring together the global vascular EDS community from within the consortium, to View page
The Ehlers-Danlos Society would like to say a big thank you to Professor Qasim Aziz and all of the team at The Wingate Institute who have helped us last weekend bring to London the HEDGE genetic study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS). “It’s so incredible being part of such View page
The online educational and mentoring program connects Ehlers-Danlos syndrome (EDS) experts with clinicians around the world to improve patient care and outcomes. View page
“This round of grant proposals featured some incredibly exciting and needed research studies and projects that have the potential to change and even save lives,” stated Lara Bloom. “We cannot thank our donors enough for allowing us the honor of supporting these critical projects.” View page
