News

May 12, 2020May 12, 2020

Huntington’s Disease Awareness Month Goes Virtual in May Due to Pandemic

News

Because of the COVID-19 pandemic, Huntington’s Disease Awareness Month organizers have come up with creative ways to show support and call attention to the disorder during May. In past years, ... Read more

May 11, 2020May 11, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

News, syndicated

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 5, 2020May 5, 2020

AskBio Acquires BrainVectis and Potential Gene Therapy for Huntington’s

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AskBio announced that it has acquired BrainVectis, a company developing gene therapies for Huntington’s disease and other neurodegenerative conditions. The two companies will work to advance BrainVectis’ gene therapy programs for neurodegenerative diseases associated ... Read more

April 28, 2020April 28, 2020

Enrollment Complete for GENERATION HD1 Trial Testing Tominersen for Huntington’s

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Roche has completed patient enrollment for its Phase 3 GENERATION HD1 clinical trial evaluating the potential of tominersen to delay the progression of Huntington’s disease. A total of 791 adult patients ... Read more

April 27, 2020May 1, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

News, syndicated

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in ... Read more

April 24, 2020May 1, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

News, syndicated

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 21, 2020April 21, 2020

Vaccinex’s Pepinemab Halts Brain Shrinkage, Eases Symptoms in Early Huntington’s Patients, Results Shows

News

Vaccinex’s experimental therapy pepinemab (VX15/2503) improves brain metabolism, halts its atrophy, and eases motor and cognitive symptoms in people with late prodromal (before clinical diagnosis) and early Huntington’s disease, according to ... Read more

April 14, 2020April 14, 2020

Small Molecule Seen to Reverse Huntington’s Repeat CAG Mutation

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A DNA-binding compound can reverse the repeat expansion mutation that is associated with Huntington’s disease, an early study reported. This newly developed small molecule was also seen to reduce ... Read more

April 7, 2020April 7, 2020

Factor-H Reaches Out to Huntington’s Neglected Families of South America

News

Huntington’s disease affects an average of 1 in 10,000 people worldwide. But in small, remote pockets of South America, its prevalence skyrockets to nearly 1 in 10. Reasons identified ... Read more

April 6, 2020April 2, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

News

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

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