Category: Medical & Scientific News

EDS ECHO Summit 2020

EDS ECHO SUMMIT: A Virtual Scientific Conference on EDS, HSD, and Comorbidities

The Ehlers-Danlos Society invites submission of scientific abstracts or clinical case reports related to comorbidities seen in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) to the EDS ECHO SUMMIT being held virtually 2-3 October 2020. This scientific meeting will explore the most up to date knowledge of, and research into the association, causation,
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Join EDS ECHO Nursing Program

EDS ECHO Nursing launches on International Nurses Day, 2020

Recognizing the hugely important roles nurses play in the care of patients with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), The Ehlers-Danlos Society is excited to share with you the launch of a new EDS ECHO program specifically for nurses. We are equally delighted to announce this during May Awareness 2020 and in support
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EDS ECHO celebrates its first anniversary

EDS ECHO is tackling several key issues facing patients with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD): supporting clinicians in increasing their knowledge; helping clinicians network with each other to discuss care; increasing access to care by increasing the number experienced clinicians, and supporting community advocates in raising awareness of EDS and HSD.
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Celiprolol and vEDS

An update for the vEDS community: Celiprolol

The following notice is to bring you up to date on the interactions between Acer Therapeutics Inc. and the FDA to try to find a pathway to bring celiprolol to market in the US.  The following is from a summary of the actions and recommendations recently released by Acer.   Summary of statement On March 18, 2020,
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February 2020 HEDGE Study Update

The Ehlers-Danlos Society would like to give special thanks to members of our community who took part in the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study screenings in Watford, UK, and Ghent, Belgium in February! As we search for the genetic cause or causes of hypermobile EDS (hEDS) we have now enrolled 413 participants into the
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The Ehlers-Danlos Society responds to BSR statement on hypermobility guidelines

The British Society for Rheumatology (BSR) published a statement this week, concluding that they are of the opinion that the ‘evidence base is insufficient to support the development of guidelines for hypermobility’.  We are disappointed that the BSR has made this decision. We are also disappointed that the BSR never invited The Ehlers-Danlos Society and
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The Ehlers-Danlos Society 2020 Research Grant Program

The Ehlers-Danlos Society is pleased to share with you our Research Grant program for 2020. We will announce each grant round over the course of the year but have summarised below the opening dates for your information. Further details will be provided with the online application process with each respective round.  We aspire to offer
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COL1-related overlap disorder: Recent published paper

There are currently 14 subtypes of Ehlers-Danlos syndromes (EDS). In 13 of these (i.e. all except the hypermobile subtype), the diagnosis is confirmed by the combination of clinical features, and the identification of a mutation in corresponding disease-genes. Among them, the current classification identifies 3 subtypes of EDS that are associated with mutations in the
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