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…

Some 41,000 U.S. residents are thought to live with Huntington’s disease (HD), a rare progressive disorder that breaks down brain nerve cells. During May, and as part of Huntington’s Disease Awareness Month, the Huntington’s Disease Society of America (HDSA) is launching a robust social media initiative aimed at educating…

The Huntington’s Disease Society of America (HDSA) will contribute nearly $1.9 million to its Centers of Excellence program this year, growing it by one site plus two regional partner sites. These additions bring to 55 the number of grant-funded Centers of Excellence located across the U.S. and to 10…

A motion to expand specialist services for families in Scotland affected by Huntington’s disease (HD) received what’s being hailed as a historic level of cross-party support in the Scottish Parliament. Backed by 98% of members of the Scottish Parliament (MSPs), the call to action is said to be the…

Celebrities turned out in force — albeit virtually — to support the 7th Annual Freeze HD event, hosted by the Huntington’s Disease Society of America (HDSA), which raised more than $211,000 to help improve the lives of families affected by Huntington’s disease (HD). The 2.5-hour show, held online for…

While the Huntington’s Disease Society of America (HDSA) is pleased a U.S. House of Representatives subcommittee recently held a key hearing that featured Huntington’s disease, it continues to call for passage of bipartisan parity legislation. The House Energy and Commerce Subcommittee on Health hearing was focused at better…

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,…