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March 16, 2021March 16, 2021

Women with Huntington’s Experience Worse Symptoms Than Men, Global Study Suggests

News

Women with Huntington’s disease have worse motor, cognitive, and depressive symptoms than men with the condition, according to data from the global Enroll-HD observational study. Notably, no sex-specific differences were ... Read more

March 9, 2021March 9, 2021

Project Seeks Contributors to Depict Life With Huntington’s

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An alliance of Huntington’s disease (HD) organizations in the U.K. is calling for patient contributions to a project that intends to show the world what it’s like to live with ... Read more

March 8, 2021March 8, 2021

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

News, syndicated

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

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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

News, syndicated

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

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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

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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

News, syndicated

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

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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 11, 2021

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

News, syndicated

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