Tag Archive: research

Research Study Update: Muscle Strength and Physical Functioning

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 Coussens, Bruno Lapauw, Thiberiu Banica, Inge De Wandele, Verity Pacey, Lies Rombaut, Fransiska Malfait, and Patrick Calders explain more about the study: “This research was
View page


Funded Research Study Update: Prof. Marina Colombi

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 (hEDS) and hypermobility spectrum disorders (HSD): destructuring the fibroblast secretome to define bioactive molecules and disease mechanisms, and in vivo translational studies”, with Professor Marina
View page


Aytu BioPharma Update- AR101/Enzastaurin IND Cleared by FDA

Aytu BioPharma Announces FDA Clearance of Investigational New Drug (IND) Application for AR101/Enzastaurin in Vascular 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 vascular Ehlers-Danlos syndrome (vEDS).   This clearance will enable the company to commence its pivotal PREVEnt clinical trial in early 2022, investigating the ability of enzastaurin to reduce the severe
View page


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
View page


Rare Disease Day. Rare is Many, Rare is strong, Rare is proud.

The Ehlers-Danlos Society celebrates Rare Disease Day, 2021 

February 28 is Rare Disease Day, but what is a rare disease?  In Europe, a rare disease is defined as when it affects fewer than one in 2,000 people. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.  There are over 300 million people living with one or more
View page


My twin sister and I fought to be believed

At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then I would chat with my identical twin sister then we realized that our pain was very similar.  At around the age of 13, I decided
View page


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
View page


a selfie of a woman wearing glasses and a neck brace

I was told that I ‘just have an achy body type.’

I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2018 at age 33. I had at this point had symptoms my entire life (hypermobility, headaches, joint pain, fatigue, gastrointestinal issues, autonomic intolerance etc.), but no one had pieced together my jigsaw. In 2015 I was pregnant with my first baby. I had a very difficult
View page


Aiming at making a difference

My name is Isabella and I just turned 22 at the end of May, which is the awareness month for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) back in 2014 and last summer I got the confirmation of my diagnosis based on the new evaluation criteria
View page