Why Families Are Critical To HD Research
Posted on September 12, 2019
Ever wonder why HDSA and the HD research community is always talking about Enroll-HD? Are you curious about the HD…
Read MoreNew HD Research Survey on Occupational Therapy
Posted on September 5, 2019
Occupational therapists at CUNY York College are conducting a 5-minute survey of both patients and caregivers that seeks to understand…
Read MoreTurning Off the Cause of Huntington’s Disease
Posted on August 29, 2019
Blogger and HD advocate “Gene Veritas” shared a post this week about gene editing and an upcoming gene therapy symposium…
Read More“Hiccup” in HD Gene Contributes to Age of HD Onset
Posted on August 22, 2019
The age that Huntington’s disease symptoms appear can vary a lot from person to person. For decades, scientists have been…
Read MoreHDSA Accepting Letters of Interest for 2020 Centers of Excellence Program
Posted on August 15, 2019
HDSA’s Centers of Excellence (COEs) provide multidisciplinary care services to families affected by Huntington’s disease, including neurology, psychology, genetic counseling,…
Read MoreParticipate in HDSA’s Survey About PGD-IVF
Posted on August 8, 2019
HDSA is committed to providing individuals and families impacted by HD with the resources they need to make informed choices….
Read MorePRECISION-HD2 Results from Wave Life Sciences Expected in Late 2019
Posted on August 1, 2019
Wave Life Sciences is conducting two early safety studies of huntingtin-lowering therapies, called PRECISION-HD1 and PRECISION-HD2. In a business update…
Read MoreHD Legacy: Brain Donation for HD Research
Posted on July 25, 2019
To enable cutting-edge Huntington’s disease research, HDSA is collaborating with CHDI to support the donation of brain and other organs…
Read MoreGene Silencing Therapy for Amyloidosis Approved in the UK
Posted on July 17, 2019
Last week saw the approval of a genetic therapy for a rare disease called hereditary transthyretin-mediated amyloidosis (hATTR amyloidosis). As…
Read MoreThe Blog Returns: 34th Annual HDSA Convention Research Recap
Posted on July 11, 2019
This week, Dr. Fox returns from maternity leave and resumes the HDSA research blog! The 34th Annual HDSA Convention in…
Read More#LetsTalkAboutHD
Posted on April 4, 2019
May is HD awareness month, and every day HDSA will be sharing family stories, celebrity PSAs, HD facts and much…
Read MoreRoche/Genentech Amends GENERATION-HD1 Study
Posted on March 28, 2019
On Thursday, March 21st, Roche/Genentech released a Community Statement about changes to the GENERATION-HD1 study, the clinical trial testing huntingtin-lowering…
Read MoreInterview with Roche Representatives
Posted on March 21, 2019
A few weeks ago we blogged about the Annual CHDI Huntington’s disease Therapeutics Conference in Palm Springs, California. This week,…
Read MoreGene Therapy 101
Posted on March 14, 2019
In addition to ongoing clinical trials of Roche/Genentech and Wave huntingtin-lowering therapies, a number of other companies are developing drugs…
Read MoreAnnual CHDI Huntington’s Disease Therapeutics Conference
Posted on March 7, 2019
This week in Palm Springs, California, CHDI Foundation hosted the 14th Annual HD Therapeutics Conference. This yearly conference draws academic…
Read MoreSecond Annual HD-COPE Meeting
Posted on February 28, 2019
The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) met this week in New York City. HD-COPE unites organizations serving HD…
Read MoreHDSA Research Webinar on DNA Repair Next Thursday, February 20th
Posted on February 14, 2019
Over the past 15-20 years we have learned that the CAG repeat mutation that causes HD is dynamic – the…
Read MoreHDSA Expands Centers of Excellence Program to 47 Sites
Posted on February 7, 2019
HDSA Centers of Excellence provide world-class multidisciplinary care to families all over the United States. Professionals at these locations include…
Read MoreFirst Patient Enrolled in Pivotal Huntingtin-Lowering Trial
Posted on January 31, 2019
This week, Ionis Pharmaceuticals issued a press release stating that the Phase 3 trial of the huntingtin-lowering therapy formerly known…
Read MoreTwo Announcements From Drug Companies
Posted on January 24, 2019
This week, we learned that the SIGNAL trial has completed recruitment for its Phase 2 study of VX15/2503 (pepinemab), a…
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