May 12, 2020May 8, 2020
Honoring a Huntington’s Family Member Dedicated to Finding a Cure
A Family Tradition - a Column by Carlos Briceño, Columns
May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, my wife, Jill, received ... Read more
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 ... 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 ... Read more
May 8, 2020May 7, 2020
Practicing Self-care and Letting Go of the Guilt
Always Looking Forward – a Column by Alexus Jones, Columns
All of my friends know about my love of wine. The first summer after I turned 21 I was ... Read more
May 5, 2020April 30, 2020
Hugging Is One of the Things I Miss the Most
A Family Tradition - a Column by Carlos Briceño, Columns
The first time I met my wife, Jill, she told me she wasn’t comfortable with “PDA.” Being a smart ... Read more
May 5, 2020May 5, 2020
AskBio Acquires BrainVectis and Potential Gene Therapy for Huntington’s
News
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 ... Read more
April 30, 2020April 30, 2020
NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts
syndicated
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases ... Read more
April 29, 2020April 29, 2020
Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak
Announcements
FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are joining forces to provide patients ... Read more
April 28, 2020April 28, 2020
Enrollment Complete for GENERATION HD1 Trial Testing Tominersen for Huntington’s
News
Roche has completed patient enrollment for its Phase 3 GENERATION HD1 clinical trial evaluating the potential of tominersen to delay the ... Read more
April 28, 2020May 1, 2020
Forced Family Time
A Family Tradition - a Column by Carlos Briceño, Columns
My wife, Jill, and I live in Illinois, where the governor has declared a stay-at-home order for our entire ... 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 ... 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 ... Read more

May 12, 2020May 8, 2020

Honoring a Huntington’s Family Member Dedicated to Finding a Cure

A Family Tradition - a Column by Carlos Briceño, Columns

May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, my wife, Jill, received some devastating news: Her second cousin, Pamela Averman, had passed ... Read more

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 8, 2020May 7, 2020

Practicing Self-care and Letting Go of the Guilt

Always Looking Forward – a Column by Alexus Jones, Columns

All of my friends know about my love of wine. The first summer after I turned 21 I was in Maine, and I spent many weekends traveling down to ... Read more

May 5, 2020April 30, 2020

Hugging Is One of the Things I Miss the Most

A Family Tradition - a Column by Carlos Briceño, Columns

The first time I met my wife, Jill, she told me she wasn’t comfortable with “PDA.” Being a smart aleck, I asked her why she didn’t like personal digital ... Read more

May 5, 2020May 5, 2020

AskBio Acquires BrainVectis and Potential Gene Therapy for Huntington’s

News

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 30, 2020April 30, 2020

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

syndicated

As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the ... Read more

April 29, 2020April 29, 2020

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Announcements

FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and ... Read more

April 28, 2020April 28, 2020

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

News

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 28, 2020May 1, 2020

Forced Family Time

A Family Tradition - a Column by Carlos Briceño, Columns

My wife, Jill, and I live in Illinois, where the governor has declared a stay-at-home order for our entire state. It’s been weeks now. He also suggests canceling summer ... 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