Author Archives: Mary Chapman

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,…

Health advocacy efforts generally promote health and access to care. If you or a family member has a rare disease such as Ehlers-Danlos syndrome (EDS), it may be helpful to learn more about such work and how you might get involved. What is EDS? EDS refers to a group…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. 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…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare disease communities and salute the creativity of its members. Awardees will be able to display their art and…