Mary Chapman,  features writer—

The emphasis of this year’s Huntington’s Disease Awareness Month, celebrated each May, is on the patient journey. Also, International Huntington’s Disease Awareness Day is May 15. Huntington’s disease, or HD for short, is a progressive neurodegenerative condition believed to impact 4.9 per 100,000 people globally, including some…

Neurocrine Biosciences is offering a new online educational resource called More Than HD that seeks to inspire and give hope to Huntington’s disease patients and their caregivers by helping them prepare for their journey with the disease. “It was important for us at Neurocrine to create More Than…

May is Huntington’s Disease Awareness Month, and this year the focus is on the patient experience. Huntington’s disease (HD) is a neurodegenerative disorder thought to affect 4.9 per 100,000 people worldwide, including about 41,000 U.S. residents, and can impact many aspects of everyday life. While each patient’s journey…

The Hereditary Disease Foundation (HDF) is recognizing two scientists, Steven Finkbeiner and Natalia Barbosa, for their leadership in Huntington’s disease research. Both will speak at the organization’s 2022 Virtual Gala, set for Nov. 10 starting at 7 p.m. ET. The free, hourlong event will cover…

The pharmaceutical company Teva is turning to social media to help people with Huntington’s disease (HD) to improve the management of chorea — a hallmark motor symptom that an estimated 90% of patients with the neurodegenerative disorder will develop. The company, fully Teva Pharmaceutical Industries, has established…

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…

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…