Medical & Scientific News

A recent study reviewed health records of more than 54,000 people with Ehlers-Danlos syndromes (EDS) and found higher rates of many gynecologic and pregnancy‑related conditions in people with EDS compared

According to new research, people with joint hypermobility may face a higher risk of developing long COVID. Researchers surveyed over 1,800 adults who had previously been infected with COVID-19. They

The newly published Perioperative Management Guide for the Trifecta Client of EDS, MCAS & POTS was developed following discussions at The Ehlers-Danlos Society CORE Network of Excellence meeting in Baltimore,

Myalgic encephalomyelitis (ME), also known as CFS (chronic fatigue syndrome), is a complex and poorly understood condition. It has limited management options and remains underfunded in research and healthcare. Many

Thank you to Zevra Therapeutics who is sponsoring The Ehlers-Danlos Society this #REDS4VEDS Day. Zevra Therapeutics is developing ACER-002 (celiprolol) tablets for the treatment of vEDS in people with a COL3A1 variant to

Many people in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) community experience symptoms and complications of comorbidities that are also seen in Long COVID. These include, for example,

Zevra Therapeutics is developing ACER-002 (celiprolol) tablets for the treatment of vEDS in people with a COL3A1 variant to reduce the risk of arterial and other hollow organ clinical events. “Vascular Ehlers-Danlos

September 19 is Aortic Dissection Awareness Day Arteries are tubes that carry blood from the heart to the rest of the body. Arterial aneurysm, dissection, and rupture are key features

A recent study funded by The Ehlers-Danlos Society, and published in the American Journal of Medical Genetics, has identified potential blood-based biomarkers that could help diagnose hypermobile Ehlers-Danlos syndrome (hEDS) and

The Ehlers-Danlos Society, in collaboration with The Norris Lab, advises that it is too soon to be offering a genetic test for hypermobile Ehlers-Danlos syndrome (hEDS) looking for the KLK

Ellen Ewer, MSc1, Hanadi Kazkaz, MD1,2, Nelly Ninis, MD3, Peter Rowe, MD4, Robby De Pauw, PhD5,6,7, Eudora Tang, MSc1,8, Cathy Barrett, MPhtySt1,9, Lies Rombaut, PhD10, Inge De Wandele, PhD10,*, and

The Ehlers-Danlos Society is excited to announce a new hypermobile Ehlers-Danlos syndrome (hEDS) research study, thanks to a generous $2 million donation. Part of an overall $6.7 million donation for

Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue disorder whose genetic cause has been difficult to identify. Researchers at the Norris Lab conducted a study looking for genetic links to

The Pelvic Disorders Working Group of the International Consortium on Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), has collaborated on a comprehensive publication of guidelines tailored for healthcare professionals,

Low-dose naltrexone (LDN) has been used to treat chronic pain. There is, however, no agreement on effective dosage, leaving clinicians without guidelines on initiating treatment with naltrexone.   A recent research

Last weekend, in New York, USA, The Ehlers-Danlos Society had a very successful meeting on progress on the HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study.  We welcomed the members of the

In a world where rare and complex diseases often struggle to find a voice, the EDS ECHO program stands as a beacon of success. As we celebrate its 5th anniversary,

A recent study published in BMJ Public Health found that individuals with generalized joint hypermobility might face a greater risk of not fully recovering from COVID-19.  The research study involved

New research suggests some complications considered “normal” for pregnancy and birth may be related to conditions of hypermobility. The study aimed to examine outcomes and complications in people childbearing with

Picture looking at the world through a lens that blurs, clouds, and distorts everything you see. This is a daily reality for many individuals with keratoconus.⁠ ⁠ Keratoconus is an

A research team at the University of Minnesota conducted research on the healthcare experiences of individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) in the United States

A newly published study, The Impact of Podiatric Intervention on the Quality of Life and Pain in Children and Adolescents with Hypermobility, evaluated the effect of custom-made orthotics on pain,

Ear, nose, and throat (ENT) specialists at a laryngology clinic in the United Kingdom have found an increase in referrals for patients with Ehlers–Danlos syndromes (EDS) experiencing symptoms of: Dysphagia

The Ehlers-Danlos Society is deeply saddened to hear of the passing of Professor Peter Beighton, a renowned British geneticist.  Professor Beighton’s contributions to the medical field are extensive, having authored,

Dr. Philip Bull and Dr. Alan Hakim, in partnership with Long Covid advocate, Gez Medinger, are conducting new research looking at whether generalized (widespread) joint hypermobility may be a risk

Many doctors worldwide hesitate to diagnose hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndromes (EDS) in children and adolescents, resulting in many undiagnosed and unmanaged cases.  Twelve of the thirteen classified

The Ehlers-Danlos Syndrome National Diagnostic Service in Sheffield, UK, has published a new paper on vascular Ehlers-Danlos syndrome (vEDS) diagnosis and management, in the European Journal of Human Genetics: Diagnosis

A newly published paper, Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes, discusses how negative clinical encounters can traumatize patients, leading to

Physical activity and physical fitness have been described as important health-related outcomes for all age groups and children with chronic conditions. However, physical activity and physical fitness have not been

April is Autism Acceptance Month. Research continues to show that people with joint hypermobility, Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorders (HSD) are more likely to be autistic than would

The Ehlers-Danlos syndromes (EDS) are known to be associated with increased bleeding symptoms, including easy bruising, gum bleeding, and abnormal uterine bleeding. This bleeding is due to modifications in collagen

Neurodiversity Celebration Week is a worldwide initiative that challenges stereotypes and misconceptions about neurological differences, creating more inclusive and equitable cultures that celebrate differences and empower every individual.  Neurodivergence and

March 15, 2023, is the first International Long Covid Awareness Day.   Many people in the EDS and HSD community will already have the symptoms described in Long COVID without ever

We are aware of the challenges globally around finding expert help for upper cervical instability (UCI) – which includes craniocervical and atlantoaxial instability. A new paper has been published this

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

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