News

High Rates of Vulvodynia Likely in Women With EDS/HSD: Survey

Half of the women with Ehlers–Danlos syndrome (EDS) or hypermobile spectrum disorder (HSD) who took part in an online survey reported being affected by vulvodynia — a condition that causes chronic pain in the vulva — as well as dyspareunia, also known as genital pain during sexual intercourse, results…

New COL3A1 Mutation Linked to Vascular EDS in Japanese Woman

A new mutation in the COL3A1 gene has been linked to vascular Ehlers-Danlos syndrome (vEDS) in a woman in Japan, scientists report. This genetic variant — which was not found among more than 8,000 healthy Japanese people nor in worldwide databases of disease-associated variants — adds to the increasing number…

Hypermobile EDS Clinically Similar to Hypermobility Disorders, Study Finds

Excluding pain, movement problems and spontaneous bleeding, people diagnosed with hypermobile Ehlers–Danlos syndrome (hEDS) and those with hypermobile spectrum disorder (HSD) have comparable disease severity and extra-articular (not affecting the joints) symptoms, according to a study. A physical therapy program also eased symptoms in a similar way for…

Global Genes, Diversity Coalition Team Up to Advance Health Equity

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

Ehlers-Danlos Society Releases Statement on Opioid Use

The Ehlers-Danlos Society, in collaboration with the EDS and HSD International Consortium Pain Working Group, recently released a statement regarding opioid use by people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). EDS is a group of genetic disorders that specifically affect the connective tissue…