Huntington’s Disease News

March 8, 2021March 8, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Huntington's Disease News

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 2, 2021March 2, 2021

Wearable Devices May Aid Diagnosis, But Need Improvement

Huntington's Disease News

Wearable devices show considerable promise in helping diagnose people with Huntington’s disease, but the studies evaluating them need to be standardized to maximize their potential benefit to patients, a review ... Read more

February 25, 2021February 25, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Huntington's Disease News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 23, 2021February 23, 2021

HDSA Expands Centers of Excellence Program to 54 Sites

Huntington's Disease News

With some recent additions, the Huntington’s Disease Society of America (HDSA) has expanded its Centers of Excellence program — ensuring comprehensive care provided by multidisciplinary care teams — to 54 ... Read more

February 23, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Huntington's Disease News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 16, 2021February 17, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Huntington's Disease News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 16, 2021February 16, 2021

Eurodis Survey: Healthcare Experience Worse for Rare Disease Patients

Huntington's Disease News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 16, 2021February 16, 2021

Safety Seen in AMT-130 Gene Therapy Trial, Six More Patients to Enroll

Huntington's Disease News

No significant safety concerns were found in the first four patients participating in a Phase 1/2 trial assessing the safety and efficacy of uniQure’s AMT-130, an experimental gene therapy for ... Read more

February 10, 2021February 10, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Huntington's Disease News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 9, 2021February 9, 2021

UK Guidelines Look to Better Mental Health of Huntington’s and Other Patients

Huntington's Disease News

The British Psychological Society has released evidence-based recommendations for health professionals managing the psychological health of people with Huntington’s disease and other neurodegenerative disorders. Its document noted the lack of research on psychological ... Read more

February 8, 2021February 8, 2021

Adira Foundation Arises From Life-altering Accident to Help Those With Chronic Ills

Huntington's Disease News

Greg Smiley’s world changed abruptly in 2013. He was racing down a mountain road on an outback cycling trip in South Africa, when he hit an obstruction in the road ... Read more

February 2, 2021February 2, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Huntington's Disease News

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

February 2, 2021February 2, 2021

More MOR1 May Contribute to Psychiatric, Motor Symptoms

Huntington's Disease News

Higher-than-normal levels of mu-opioid receptor 1 (MOR1) in the striatum — a brain region particularly affected in Huntington’s disease — may contribute to both early psychiatric symptoms and late motor ... Read more

January 26, 2021January 26, 2021

PET Scan Used to Distinguish Juvenile HD From Parkinson’s in Case Study

Huntington's Disease News

A teenage boy with a history of parkinsonism was diagnosed with juvenile-onset Huntington’s disease (HD) using high-sensitivity positron emission tomography imaging, known as a PET scan, as described in a recent case ... Read more

January 20, 2021February 20, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

Huntington's Disease News

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for ... Read more