Ehlers-Danlos News

June 20, 2022June 20, 2022

Imbalances in Sensory Signals Linked to Chronic Pain in Hypermobile EDS

Ehlers-Danlos News

Imbalances among sensory signals may contribute to the chronic pain experienced by people with hypermobile Ehlers-Danlos syndrome (hEDS), according to a report. In addition, exercise-induced hypoalgesia or EIH — a ... Read more

June 13, 2022June 13, 2022

Genetic Testing May Identify New Gene Mutations in EDS: Study

Ehlers-Danlos News

A genetic testing technique called next-generation sequencing (NGS) may help unveil unrecognized disease-causing mutations linked with Ehlers-Danlos syndrome (EDS) and related disorders, a Polish study suggests. The study “Next-Generation Sequencing ... Read more

June 6, 2022June 6, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

COVID-19 News, Ehlers-Danlos News

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

May 23, 2022May 23, 2022

Ehlers-Danlos Society Awards $400K for New Research Into hEDS, HSD

Ehlers-Danlos News

The Ehlers-Danlos Society has announced $400,000 in funding for a new research project that seeks to shed light on the biology of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders ... Read more

May 16, 2022May 16, 2022

Acer Reaches Agreement With FDA; Phase 3 Trial of Edsivo to Begin Soon

Ehlers-Danlos News

Acer Therapeutics expects to launch its pivotal Phase 3 DISCOVER trial — which will test Edsivo (celiprolol) in patients with COL3A1-positive vascular Ehlers-Danlos syndrome (vEDS) — by the end of ... Read more

May 2, 2022May 2, 2022

‘Acts of Awareness’ Welcome in May, Marking EDS and HSD Month

Ehlers-Danlos News

From committing repeat “acts of awareness” to participating in social media challenges, supporters globally are marking Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) month, observed each May. The month is ... Read more

April 29, 2022April 29, 2022

Organizations Rally to Help Ukrainian Rare Disease Patients

Ehlers-Danlos News

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ... Read more

April 25, 2022April 25, 2022

‘Player Like Me’ Showcases Healing Potential of Gaming With EDS

Ehlers-Danlos News

Gamers Outreach and Xbox are working together to promote a documentary that showcases how gaming can help to forge connections among people with rare diseases like Ehlers-Danlos syndrome (EDS). The ... Read more

April 18, 2022April 18, 2022

Europe Awaits Proposed New Framework for Sharing Health Data

Ehlers-Danlos News

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health ... Read more

April 12, 2022April 12, 2022

Telehealth Added to Latest Digital-friendly NORD State Report Card

COVID-19 News, Ehlers-Danlos News

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues ... Read more

April 11, 2022April 11, 2022

Edsivo Named Breakthrough Therapy by FDA for COL3A1-positive vEDS

Ehlers-Danlos News

Edsivo (celiprolol) has been granted a breakthrough therapy designation for COL3A1-positive vascular Ehlers-Danlos syndrome (vEDS) by the U.S. Food and Drug Administration (FDA). The designation is meant to expedite the ... Read more

April 4, 2022April 4, 2022

Treating Very Rare EDS Type Early May Help Prevent Complications

Ehlers-Danlos News

Diagnosing and treating a very rare type of Ehlers-Danlos syndrome (EDS) early would help prevent further complications and potentially improve quality of life for patients with the condition, called arthrochalasia ... Read more

March 28, 2022March 28, 2022

Successful Treatment of Rare vEDS Case With TAK Reported in Study

Ehlers-Danlos News

A first case of vascular Ehlers Danlos syndrome (vEDS) occurring with Takayasu arteritis (TAK) — a rare inflammatory condition in blood vessels — was successfully treated with anti-inflammatory therapy, according ... Read more

March 21, 2022March 22, 2022

Increased Education Crucial to Improving Rare Disease Care, Survey Finds

Ehlers-Danlos News

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over ... Read more

March 14, 2022March 14, 2022

RaDaR Serves as Starting Point for Creating Rare Disease Registry

Ehlers-Danlos News

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric ... Read more