Ehlers-Danlos News

October 23, 2020October 23, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

COVID-19 News, Ehlers-Danlos News

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series ... Read more

October 16, 2020October 16, 2020

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

Ehlers-Danlos 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, and ... Read more

October 2, 2020October 2, 2020

Complex Concerns of EDS Focus of Virtual ECHO Summit Opening Today

Ehlers-Danlos 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. The ... Read more

September 25, 2020September 26, 2020

Diagnostic Criteria for Classical EDS May Need Update, Study Suggests

Ehlers-Danlos 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 an ... Read more

September 18, 2020September 21, 2020

Women With EDS Have Higher Risk of Pregnancy, Delivery Complications

Ehlers-Danlos 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 without ... Read more

August 27, 2020September 27, 2020

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

Ehlers-Danlos News

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 input ... Read more

August 20, 2020September 20, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Ehlers-Danlos News

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. The ... Read more

August 13, 2020August 13, 2020

Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract

Ehlers-Danlos 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 found. ... Read more

August 12, 2020September 13, 2020

New Streaming Channel Showcases Rare Disease Films

COVID-19 News, Ehlers-Danlos News

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 films ... Read more

July 30, 2020July 30, 2020

New Screening System Allows HEDGE Study Enrollment Without In-person Visits

Ehlers-Danlos News

A new screening system will allow people with hypermobile Ehlers-Danlos syndrome (hEDS) to participate in the worldwide Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study without an in-person visit, the Ehlers-Danlos Society ... Read more

July 23, 2020July 24, 2020

Corrective Laser Eye Surgery Reported in Rare Patient Case Study

Ehlers-Danlos News

Corrective eye surgery may be an option for some types of Ehlers-Danlos syndrome (EDS), according to a recent case report. Eye surgery is generally not recommended for EDS patients because ... Read more

July 16, 2020July 17, 2020

Rare Vascular Case of EDS Linked to Newly Identified Mutation

Ehlers-Danlos News

Physicians should suspect vascular Ehlers-Danlos syndrome when a patient shows recurrent pulmonary complications and unusually thin skin and hypermobile joints, a case report suggests. The patient was found to have a previously unknown ... Read more

July 9, 2020August 9, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Ehlers-Danlos News

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in ... Read more

June 25, 2020June 25, 2020

hEDS-related Pain May Be Linked to Deficit in Pain Control Mechanisms, Study Shows

Ehlers-Danlos News

Pain in people with hypermobile Ehlers-Danlos syndrome (hEDS) likely is the result of an impaired pain suppression system that may lead to widespread pain, a study shows. The data, which also ... Read more

June 23, 2020July 24, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

COVID-19 News, Ehlers-Danlos News

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support ... Read more