Category: Medical & Scientific News

vEDS clinical trial announced

Acer Therapeutics Plans Clinical Trial for EDSIVO™ (celiprolol) in Vascular Ehlers-Danlos Syndrome 

The pharmaceutical company, Acer Therapeutics Inc. (Nasdaq: ACER), focus on the acquisition, development, and commercialization of therapies for serious rare and life-threatening diseases with significant unmet medical needs, announcing this week that they are planning a pivotal clinical trial in patients with COL3A1+ vascular Ehlers-Danlos syndrome (vEDS) with the treatment EDSIVO™ (celiprolol). Vascular EDS is a
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vEDS clinical trial announced

Clinical trial announced for vascular Ehlers-Danlos syndrome (vEDS)

Specialty pharmaceutical company, Aytu BioPharma, announced this week that they will be conducting a pivotal clinical trial for the development of treatment for vascular Ehlers-Danlos syndrome (vEDS).  What is vascular Ehlers-Danlos syndrome?  VEDS is estimated to occur between 1 in 50,000 individuals to 1 in 200,000 and results from pathogenic variants in COL3A1, which is responsible for producing chains of
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The National Economic Burden of Rare Disease Study

The National Economic Burden of Rare Disease Study

The EveryLife Foundation for Rare Diseases has published its findings on the economic burden of rare diseases in the USA. Through the advocacy work of our Community and Advocacy Director, Shani Weber, The Ehlers-Danlos Society was invited to share the Foundation’s survey questionnaire. Members of the EDS community in the USA contributed to the survey,
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2020 Research Grants. Clinical research takes place in the left hand corner. Hands come together in the bottom left corner, and a microscope sits in a laboratory.

Applications Now Open: Basic Research Grants & Microgrants

The Ehlers-Danlos Society is now welcoming applications for its second microgrant round and Basic Research Major Grants. Microgrants In early 2020 the applications opened for the Spring Microgrants program 2020. The Society was able to award a number of $5,000 microgrants to assist researchers undertaking research, surveys, and data analysis in the areas of Ehlers-Danlos
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New screening system announced for HEDGE

The Ehlers-Danlos Society Announces New HEDGE Screening System

To break down geographical barriers in research participation and to adapt to limitations on travel, The Ehlers-Danlos Society is delighted to announce a new screening and enrollment process for the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE).  The exciting newly-established process will make it possible for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) to enroll in the groundbreaking
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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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