Mary Chapman, features writer —

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. 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…

Railway signalman Sandy Patience has witnessed the devastating effects of Huntington’s disease on family members. When he learned two years ago that he, too, inherited the neurodegenerative disorder, the news was crushing. But now, as one of the first Scotland residents to participate in an international Phase 3 trial…

Encouraging the families of people affected by Huntington’s disease to donate, post-mortem, their brain and other organs so as to advance research into the disease and its possible treatments is the goal of the Huntington’s Disease Society of America (HDSA) and the CHDI Foundation partnership. Called HD Legacy, the…

Aiming to raise awareness about Huntington’s disease (HD) while also commemorating a decade of community service, HD Reach presented its annual Education Day April 6 in Raleigh, North Carolina. Themed “Looking Back, Reaching Forward,” the event was held at the McKimmon Center at North Carolina State University. The non-profit…

In support of ongoing development of a prospective new therapy for Huntington’s disease, the California Institute for Regenerative Medicine (CIRM) has awarded University of California, Irvine (UCI) investigators $6 million in funding. The hope is that the two-year study, which continues development of a human neural stem…

Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they are thought to impact. Across countries, patients, caregivers and advocates will paint faces, wear…

With the support of Houston Astros pitcher Joe Smith and the University of Texas Health Science Center at Houston (UTHealth), about 100 Huntington’s disease patients and their families got to relax for a few hours and take in a ballgame at Minute Maid Park. The tickets for…