Updates

November 26, 2020November 26, 2020
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their ... Read more
November 25, 2020November 23, 2020
Would You Want to Know If You Have Huntington’s?

Editor’s note: This column briefly mentions the topic of suicide. Please find resources for help at the end of the column. Unlike many rare ... Read more
November 24, 2020November 20, 2020
I’m Determined to Focus on Gratitude

Two years ago, my wife, Jill, took a genetic test and discovered she has Huntington’s disease. Thanksgiving wasn’t the same that year. Last year, ... Read more
November 24, 2020November 24, 2020
Phase 1 Trial Will Test Oral PTC518 Candidate Therapy; First Results Due Early 2021

A Phase 1 trial will evaluate PTC Therapeutic’s PTC518, its investigational therapy for Huntington’s disease, in healthy volunteers, the company announced. The trial’s first ... Read more
November 18, 2020November 16, 2020
The Value of Consulting a Genetic Counselor During Testing

As I briefly touched on in my previous column, “Opportunities for a Better Genetic Testing Process,” the testing process in the Huntington’s disease ... Read more

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May 23, 2016May 23, 2016

Blocking 2 Enzymes Seen to Reduce Nerve Cell Loss in Fruit Fly Model of Huntington’s

News

A collaboration between researchers at the University of Leicester, U.K., and the University of Maryland School of Medicine, Baltimore, may lead to a way of reversing some symptoms of neurogedenerative diseases, like Huntington’s, by blocking two specific enzymes of the kynurenine ... Read more

Updates

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

Would You Want to Know If You Have Huntington’s?

I’m Determined to Focus on Gratitude

Phase 1 Trial Will Test Oral PTC518 Candidate Therapy; First Results Due Early 2021

The Value of Consulting a Genetic Counselor During Testing

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

The Definition of a Caregiver

PDYN-derived Peptides Identified as Possible, Much-needed HD Biomarkers

Paying Attention to My Wife’s Silent Suffering

First Patients Enrolled in PROOF-HD Phase 3 Trial Testing Pridopidine

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

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Fasting as a Means of Solidarity

1st Wexler Prize Given Scientist Studying Astrocytes Role in Huntington’s

Opportunities for a Better Genetic Testing Process

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Making a Difference in the Upcoming Elections

Branaplam Receives Orphan Drug Designation for Huntington’s; Trial Planned for 2021

Should I Get a Huntington’s Tattoo?

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

FDA Puts Voyager’s Gene Therapy Candidate VY-HTT01 on Clinical Hold

It’s Not About You … It’s About Me

Mental Preparedness Is Crucial Ahead of Genetic Testing

Safety Board Recommends AMT-130 Trial Continue Enrolling, Treating Patients

The Protective Mindset of a Caregiver

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Show, Don’t Tell: The Little Details That Count in Caregiving

Top-line Data Show Potential Cognitive Benefit of Pepinemab in Early Huntington’s Patients

‘The Good Place’ Reminds Me of the Importance of a Moment

Welcome to ‘Negative to Positives,’ A New Huntington’s Disease Column

Life Is Short, So Live It Well

Phase 3 Trial of Oral Pridopidine in Early Stage Patients Opening Soon

Learning to Expect the Unexpected

New book, ‘Harry Needs a Hug,’ Helps Children Who Have Huntington’s in Their Family

Blocking 2 Enzymes Seen to Reduce Nerve Cell Loss in Fruit Fly Model of Huntington’s