Mary Chapman, features writer —

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

People who have Ehlers-Danlos syndrome (EDS) sometimes need to undergo surgery to fix joint problems or treat fractures. However, such procedures can be problematic. Here are some things to consider about EDS and surgery. What is EDS? EDS refers to a group of genetic disorders affecting the connective…

If you have Ehlers-Danlos syndrome (EDS), you likely know that the laxity of your tissues, and other symptoms, could present challenges during pregnancy. If you do decide to conceive, careful planning and management are key. What is EDS? EDS is a group of genetic disorders that affect…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Because many members of the Ehlers-Danlos syndrome (EDS) community are overwhelmed and at home during the global COVID-19 pandemic, the Ehlers-Danlos Society is offering additional virtual support meetings, as it did in March. The free hour-long online events are opportunities for patients, their families, and caregivers to communicate with each…

The Ehlers-Danlos Society is offering a series of virtual events for community members to express concerns, ask questions, and address practical challenges during the global COVID-19 (Coronavirus) outbreak. The free, hour-long digital support meetings will run on the Zoom teleconferencing platform. Each chat session is limited to 100 people,…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

To discuss the latest information about Ehlers-Danlos syndrome (EDS) and related disorders, patients and their families, scientists, and clinicians will convene in Paris from March 21-22 for the first European Learning Conference. Presented by the Ehlers-Danlos Society, and held at the Hotel Mercure Paris Orly Rungis,…

The Ehlers-Danlos Society has helped to launch a center at Indiana University Health (IU Health) to advance research, education, and patient care in some of the least understood genetic diseases. Called The Ehlers-Danlos Society Center, it will provide comprehensive and multidisciplinary care for patients with Ehlers-Danlos syndrome…