Contributors: Ken Kast and Frances Saldaña HD-CARE Board Members Prolonged Grief is a novel diagnosis. It was officially included in the 2021 update to The Diagnostic and Statistical Manual of Mental Disorders,…
Roche/Genentech plans for GENERATION HD2, a new Phase II clinical study
Roche and Genentech announce new clinical trial to begin early next year - Generation HD2 - to explore the use of tominersen in younger, less symptomatic HD patients. Click here…
American Psychiatric Association: Prolonged Grief Disorder
Grief is a natural response to the loss of a loved one. For most people, the symptoms of grief begin to decrease over time. However, for a small group of…
One-on-One Meetings with Medicine: Precision Health at the Intersection of Health and Neurodegenerative Disease
Join us for this hybrid community lecture featuring Leslie Thompson, PhD, and Anna Morenkova, MD. This lecture will be held both in-person at Sue & Bill Gross Stem Cell Research…
The 988 Lifeline
988 is now active across the United States. This new, shorter phone number will make it easier for people to remember and access mental health crisis services. (Please note, the…
YARR Leadership Academy applications are now open!
The EveryLife Foundation for Rare Diseases is excited to offer the return of the Young Adult Representatives of RDLA (YARR) Leadership Academy, a series of on-line courses offered to a select…
STRIDE-TRANSCEND Summer Symposium
Presentations – Posters – Networking – Lunch SATURDAY, JULY 23RD9:30 AM – 2:00 PMWCH Room #205 and 206 Keynote Speaker and Patient Advocate: Frances SaldañaPresentation Title: “Advocacy and Promoting Excellence…
Better than CRISPR? Another way to fix gene problems may be safer and more versatile
The following is an excerpt from a Science | AAAS article - read more here > "A flurry of studies in the past few years in mice suggests epigenome editing…
HD-CARE DOES THE OC MARATHON
By Frances SaldanaThe much anticipated 2022 Orange County Marathon on the weekend of May 1st turned out to be more than we could have hoped for!COVID kept us hunkered down…
Hereditary Disease Foundation Webinar: “Huntington: The Story of an Ancient and Innocent Gene.”
May is HD Awareness Month! Hereditary Disease Foundation's May Research Spotlight Seminar was “Huntington: The Story of an Ancient and Innocent Gene.” If you missed it or would like to…