Ehlers-Danlos News

January 15, 2021January 15, 2021

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

Ehlers-Danlos News

U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating  diagnoses, and improving patient care and treatment, is now in practice. This  framework, signed by ... Read more

December 18, 2020December 18, 2020

Ehlers-Danlos Society Offers Scholarships for Summer Conference, Events

Ehlers-Danlos News

The Ehlers-Danlos Society has several scholarship grants available for those who wish to attend its Virtual Summer Conference 2021, or the accompanying series of one-day meetings, and without aid may ... Read more

December 11, 2020December 12, 2020

Ehlers-Danlos Society Plans Online Events for 2021

Ehlers-Danlos News

The Ehlers-Danlos Society is planning a series of virtual events that start in January and are intended to gather experts, people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), ... Read more

December 4, 2020December 4, 2020

Ehlers-Danlos Society Taking Applications for 2nd Round of Research Grant Programs

Ehlers-Danlos News

The Ehlers-Danlos Society is now accepting applications for the second round of two grant programs intended to support research projects focused on Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). ... Read more

November 26, 2020December 28, 2020

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

COVID-19 News, Ehlers-Danlos News

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a ... Read more

November 13, 2020November 13, 2020

EDS Patients Have Increased Blood Artery Stiffness, Linked to Cardiovascular Disease Risk

Ehlers-Danlos News

People with Ehlers-Danlos syndrome (EDS) have significantly greater stiffness of their blood arteries — a known risk factor for cardiovascular disease — than their healthy peers, a Swiss study shows. While vascular ... Read more

October 30, 2020October 30, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Ehlers-Danlos News

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in ... Read more

October 23, 2020January 3, 2021

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 9, 2020November 10, 2020

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

COVID-19 News, Ehlers-Danlos News

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 diseases, ... 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

September 3, 2020November 6, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

Ehlers-Danlos News

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 “A ... 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