Medical & Scientific News

With a heavy heart, we report that Aytu Biopharma, following a corporate review, has announced it is indefinitely suspending clinical development and removing expenses related to AR101/enzastaurin clinical trial for
The specialty pharmaceutical company,  AytuBio Pharma, announced the initiation of the global Phase 3 PREVEnt (Prevention of Ruptures with Enzastaurin for Vascular Ehlers-Danlos Syndrome) clinical trial. This study will be
A small number of studies have looked at the challenges the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) can present in pregnancy, childbirth, and postnatal care, and yet there
The specialty pharmaceutical company,  AytuBio Pharma, announced this week that it anticipates the PREVEnt trial will begin in late 2022 or early 2023. This study will be investigating the ability of enzastaurin to
The specialty pharmaceutical company, Aytu BioPharma, Inc. (Nasdaq: AYTU), announced this week that the European Commission granted orphan designation to AR101 (enzastaurin), a PKCβ inhibitor, for the treatment of vascular
New research has been published that studied “Muscle Strength, Muscle Mass and Physical Impairment in Women with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.” The authors of the research, Marie
The Ehlers-Danlos Society is delighted to have provided funding as part of the Molecular Studies in hEDS and HSD $1 million grant for this research project titled, “Hypermobile Ehlers-Danlos syndrome
The specialty pharmaceutical company, Aytu BioPharma, Inc. (Nasdaq: AYTU), announced this week that it has received U.S. Food and Drug Administration (FDA) clearance of its Investigational New Drug (IND) application for AR101/enzastaurin for
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
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
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,
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.
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
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
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
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
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
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
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
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
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
In the summer of 2019 it was announced that there were changes to codes in the ICD-10 directory. We wanted to update our community with what that means going forward. 
UPDATE: November 11, 2019 Last week a paper by Demmler et al. was published looking at patient records from healthcare service databases in Wales over 27 years up to 2017.
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
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
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
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
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”
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,
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
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
The online educational and mentoring program connects Ehlers-Danlos syndrome (EDS) experts with clinicians around the world to improve patient care and outcomes.
“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.”
The Ehlers-Danlos Society is excited to announce the start of recruitment for participants in the Hypermobile Ehlers-Danlos Syndrome Genetic Research Study, devoted to finding the underlying genetic markers for hypermobile
Gift to support wide range of inquiry from bench-to-bedside, social, and psychological studies to behavioral research involving the Ehlers-Danlos syndromes, hypermobility spectrum disorders, related symptoms, and associated conditions—worldwide. BALTIMORE, MD
EDS Comorbidity Coalition to create a global resource for practical guidance in the assessment and management of all types of Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), their related symptoms,
AUGUST 9, 2018 – The Ehlers-Danlos Society funds research at all stages, scopes, and scales. Our microgrants provide funds to early-stage investigations primarily designed to provide evidence or “proof of
Summary by Dr. Rubina Aktar, PhD In the past 15 years, scientific advances have shown that bowel symptoms are very common in hypermobility related disorders, and in particular, hypermobile Ehlers-Danlos
A new, autosomal recessive type of Ehlers-Danlos syndrome has been discovered; it is very rare, so far found in only four individuals from three unrelated families. Exome sequencing (which looks
APRIL 4, 2018, BALTIMORE, MD USA — As part of its ongoing efforts to improve diagnostic and treatment outcomes for people living with the Ehlers-Danlos syndromes throughout the world, The
We are very pleased to report that following an effort led by Dr. Brad Tinkle with support from pharma companies and the International Consortium on Ehlers-Danlos syndromes and Related Disorders,
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
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
Abstract Background: Generalised Joint Hypermobility (GJH) is a hereditary condition with an ability to exceed the joints beyond the normal range. The prevalence of GJH in the adult population and
Beyond Diagnosis: A Case Study on Healing Time is a recent paper just added to our “EDS Medical Articles” section ( This study reflects about how, along one year, a Pediatric
The full text of, “Pain Management in Patients With Hypermobility Disorders: Frequently Missed Causes of Chronic Pain” by Dr. Linda Stapleford Bluestein will be available for free from Topics in
Masterclass: Advancing Practice in Hypermobility The masterclass includes presentations and workshops led by a team of national and internationally recognised specialists and researchers, including members of the International Consortium. Medical,
Published by BioMed Research International, 2/12/2017 Joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT), is a hereditary connective tissue disorder mainly characterized by generalized joint hypermobility, skin texture abnormalities, and visceral
It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also
Alan Hakim and his colleagues at University College Hospital in London were some of the first scientists to bring these cases to light. Hakim was helping to run a clinic
Company obtains exclusive rights to NDA-enabling clinical data of the company’s lead product, VASEBRA™ (celiprolol), for the treatment of vascular Ehlers-Danlos Syndrome (vEDS) CAMBRIDGE, Mass.–(BUSINESS WIRE)–Acer Therapeutics Inc., a pharmaceutical
This work is being carried out on behalf of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions. The aim of the UK Strategy for Rare Diseases
20 years from now it is expected that many new cures and treatments will be delivered either as a consequence of research using genome editing or, directly, via genome editing
Rare Disease UK is gathering information to examine the implementation of the UK Strategy for Rare Diseases in England. This work is being carried out on behalf of the All
On a good day, my shoulders, knees, and hips will dislocate two to five times apiece. The slightest bump into a table or door will bloom new bruises on my
Ehlers–Danlos syndrome (EDS)—hypermobility type (HT) is considered to be the most common subtype of EDS and the least severe one; EDS-HT is considered to be identical to the joint hypermobility
Although first described in 1892 by Tschernogobow in Moscow, the medical history of Ehlers-Danlos syndrome (EDS) begins with Edward Ehlers’s description in 1900 in Copenhagen. Several avatars would come to
Ehlers-Danlos syndrome is heterogeneous in its genetic origins, molecular defects, and ultrastructure of connective tissues (CT). It frequently represents underdiagnosed heritable conditions. The altered mechanical functions of the involved tissues
Opioids are a class of powerful pain-relieving drugs that work by activating opioid receptors on nerve cells in the body and brain. These pain relievers are generally safe when taken
A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (POTS) has recently popped up. POTS is often -erroneously- put down to the result of deconditioning – i.e,
An interesting kickstarter campaign that could help our community with our diet… We know that in the EDS community there seems to be a higher incidence of IBS related symptoms.
As the nation begins responding to the epidemic of overdoses and deaths caused by opioids, some people with chronic pain who have relied on these powerful painkillers for years are
Ehlers-Danlos syndrome (EDS) is the name applied to a rather large group of inherited disorders that affect the connective tissue, the tissue that provides support to many parts of the
The role of physical trauma in the onset of symptoms in Ehlers-Danlos syndrome (EDS) has never been characterized. We sought to search and describe brain lesions EDS patients also having
Of all live births with congenital anomalies, approximately one-third exhibit deformities of the head and face. Most craniofacial disorders are associated with defects in a migratory stem and progenitor cell
ABSTRACT: This article describes the pathophysiology, clinical presentation, differential diagnosis, diagnosis, and management of postural orthostatic tachycardia syndrome (POTS), a potentially debilitating autonomic disorder that can have many causes and