Updates

January 20, 2021January 20, 2021
NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet ... Read more
January 19, 2021January 15, 2021
Losing My Sense of Taste Taught Me a Lesson in Caregiving

Last November, I joined a club. I share this news with the same spirit that Groucho Marx once wrote his resignation letter to the ... Read more
January 19, 2021January 19, 2021
Study Links Cognitive Impairment to Reduced Gray Matter Volume

Based on MRI scans, Huntington’s disease patients with major cognitive impairments have reduced gray matter volume and a thinner brain cortex than those without ... Read more
January 14, 2021January 14, 2021
UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating diagnoses, and improving patient care and treatment, is now ... Read more
January 13, 2021January 8, 2021
No Matter Your Hardships, Today Is a Great Day to Be Alive

I’ve lost two moms in my lifetime. My biological mom, Debbie, who was with me for the first 23 years of my life, passed ... 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

NORD’s Caregiver Respite Program Continues Through Pandemic

Losing My Sense of Taste Taught Me a Lesson in Caregiving

Study Links Cognitive Impairment to Reduced Gray Matter Volume

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

No Matter Your Hardships, Today Is a Great Day to Be Alive

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Pridopidine Analysis Shows Slowed Decline in Total Functional Capacity

As Caregivers, We Can Choose a Positive Mindset

Focusing on What Is Good and Beautiful This Year

‘Dancing at the Vatican’ Spotlights Families’ Struggles, Joy at Meeting Pope

Operation Warp Speed Should Inspire a Similar Effort for Rare Diseases

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Natural History Study of Huntington’s Fully Enrolled, Triplet Says

Getting Involved in the Huntington’s Community Brings Great Rewards

Single CDNF Protein Injection Shown to Protect Nerve Cells, Improve Motor Skills in Rats

The Turn-Negatives-Into-Positives Challenge

Time Is the Best Gift to Share With Others

1st Patient Dosed in Phase 2a Trial of Annexon’s Antibody Therapy for Huntington’s

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Love Is the Mission

Late-onset Huntington’s Has Fewer Motor Defects, Similar Cognitive Progression, Study Shows

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

Fasting as a Means of Solidarity

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

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