Mary Chapman, features writer —

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 Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

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 set aside to bring attention to the group of genetic disorders affecting the connective tissues that give structure to…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Scores of virtual events are on tap for global EDS and HSD Awareness Month, observed each May. The activities are focused on heightening awareness of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders, and the individuals they affect. Patients, caregivers, and advocates worldwide are invited to perform “acts of awareness,”  flood…

The skin of people with Ehlers-Danlos syndrome is thin, vulnerable, and prone to injury. Because of this, patients sometimes need plastic surgery, which involves the repair, reconstruction, or replacement of physical defects involving the skin or other areas. Why plastic surgery may be needed EDS refers to a group of genetic…

Massage therapy may help ease symptoms, such as tight muscles and pain, often experienced by patients with Ehlers-Danlos syndrome. Here is some information about the complementary treatment that may be helpful to you if you have EDS. What is EDS? EDS refers to a group of genetic disorders…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

The Ehlers-Danlos Society is pulling together a coalition aimed at addressing a broad range of pediatric concerns in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). Among its focus areas will be misdiagnoses, evidence gaps in medical complications, and child abuse. The nascent AHEAD coalition — Action for Infants,…