Author Archives: Mary Chapman

Project Seeks Contributors to Depict Life With Huntington’s

An alliance of Huntington’s disease (HD) organizations in the U.K. is calling for patient contributions to a project that intends to show the world what it’s like to live with the neurodegenerative disorder. Through the end of May, the “living history” project is collecting photos, poems, or other works…

HDSA Expands Centers of Excellence Program to 54 Sites

With some recent additions, the Huntington’s Disease Society of America (HDSA) has expanded its Centers of Excellence program — ensuring comprehensive care provided by multidisciplinary care teams — to 54 sites that have demonstrated expertise and commitment in Huntington’s (HD) care. The program grew from 20 U.S. centers…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

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…

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…