Author Archives: Mary Chapman

The Cleveland Team Hope Walk & 5K Run is on tap for Aug. 15 to raise funds to help the Huntington’s Disease Society of America (HDSA) Northeast Ohio Chapter to improve the lives of Huntington’s disease (HD) patients and their families. The event, which seeks to raise $36,000…

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,…

U.S. lawmakers have again introduced legislation that would speed up the process for Huntington’s disease (HD) patients to get Medicare and Social Security Disability Insurance (SSDI) benefits. The Huntington’s Disease Disability Insurance Access Act of 2021 — S 868/ HR 2050 — would waive the mandatory two-year…

Activities are underway worldwide to mark Huntington’s Disease Awareness Month, set aside each year to call attention to the neurodegenerative disorder that is thought to affect three to seven per every 100,000 people of European ancestry. May 15 is International Huntington’s Disease Awareness Day. Patients, caregivers, family, and friends…

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…

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, 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…

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…