Mary Chapman, features writer —

Mary graduated from Wayne State University with a degree in journalism. She began her career at United Press International, then spent a decade reporting for the Bureau of National Affairs, Inc. (now Bloomberg Industry Group). Mary has written extensively for The New York Times, and her work has appeared in publications such as Time, Newsweek, Fortune, and the Chicago Tribune. She’s won a Society of Professional Journalists award for outstanding reporting.

Articles by Mary Chapman

About EDS and Advocacy

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…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

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…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

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…

NORD’s Caregiver Respite Program Continues Through Pandemic

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…

Art Contest Salutes Creativity of Rare Disease Communities

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…

EDS Patient Registries and Their Importance

Patient registries aim to help researchers better understand a particular disease, establish best practices, and, ultimately, find a cure. If you have Ehlers-Danlos syndrome (EDS), there are multiple registries that may be of interest to you. What is EDS? EDS refers to a group of genetic disorders affecting the…

EDS in Children

Parenting a child with Ehlers-Danlos syndrome (EDS) can be challenging. This information about pediatric EDS may be useful in helping you meet those challenges as you endeavor to provide the best possible care for your child. What is EDS? EDS refers to a group of disorders that affect the…

Other Conditions Common in EDS Patients

There are many other conditions that may exist simultaneously with Ehlers-Danlos syndrome (EDS), even though researchers don’t fully understand their association with EDS. Here is some information about what other conditions can be present in EDS patients. What is EDS? EDS refers to a group of disorders that…