News

October 16, 2020October 16, 2020

Alternative Therapies Common to Manage Pain in EDS and HSD, Survey Says

News

More than half of patients with Ehlers–Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) use complementary alternative therapies to manage pain, according to the results of a survey. Opioids, physical therapy, ... Read more

October 9, 2020October 9, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

October 2, 2020October 2, 2020

Complex Concerns of EDS Focus of Virtual ECHO Summit Opening Today

News

Treating comorbidities — or co-existing conditions — in people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) will be front and center at the virtual EDS ECHO Summit opening today. ... Read more

September 25, 2020September 25, 2020

Diagnostic Criteria for Classical EDS May Need Update, Study Suggests

News

People with classical Ehlers-Danlos syndrome (EDS) appear to have less multi-organ involvement than those with other types, suggesting that the diagnostic criteria for this type of EDS may require ... Read more

September 18, 2020September 18, 2020

Women With EDS Have Higher Risk of Pregnancy, Delivery Complications, Study Finds

News

Pregnant women with Ehlers-Danlos syndrome (EDS) have a higher risk of experiencing a number of pregnancy and delivery complications, including premature births, placenta previa, and cervical insufficiency. than those ... Read more

September 3, 2020September 3, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

August 27, 2020August 27, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 20, 2020August 20, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 13, 2020August 13, 2020

Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says

News

Patients with classical-like Ehlers-Danlos syndrome (EDS) due to tenascin-X deficiency, a rare form of EDS, are at risk for tissue fragility especially in the gastrointestinal tract, a study has ... Read more

August 12, 2020August 12, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more