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May 24, 2018May 24, 2018

Class of Lipids Merit ‘High Priority’ Attention as Possible Treatment Route in Huntington’s, Study Says

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Increasing evidence links a specific fat to Huntington’s disease, and it “merits more attention” as a “high priority” target for potential disease treatments, a review study reports. The study, ... Read more

May 22, 2018

#ERDC2018 – New EU Law to Protect Patient Data Could Affect Rare Disease Registries

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Two years after approving it, the 28-member European Union will begin enforcing its General Data Protection Regulation (GDPR) — a tough new law that aims to protect the EU’s 512 ... Read more

May 22, 2018May 22, 2018

Antibiotic May Protect Huntington’s Nerve Cells from Death, Mouse Study Suggests

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Monensin, an antibiotic widely used in feed for animals like cows that chew their cud, can help protect cells against oxidative stress linked to Huntington’s disease, according to a ... Read more

May 17, 2018May 17, 2018

AllianceRx Walgreens Prime and Walgreens Offer New Specialty Therapies, Including Austedo for Huntington’s

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AllianceRx Walgreens Prime and Walgreens now have several new limited distribution therapies available for its specialty patients, including Teva Pharmaceuticals’ Austedo (deutetrabenazine) for Huntington’s disease. Austedo was approved in ... Read more

May 17, 2018May 17, 2018

‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35

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The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. ... Read more

May 15, 2018

#ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say

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The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in ... Read more

May 14, 2018May 14, 2018

UK Group Leads Community-building Charge for Huntington’s Disease Awareness Week

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For Huntington’s Disease Awareness Week, the Huntington’s Disease Association in the U.K. has a few suggestions for ways to bring the community together and educate others. Because Huntington’s is a rare disease, few ... Read more

May 10, 2018May 10, 2018

HDYO Works Through Camps, Education to Help Young People Affected by Huntington’s

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Catherine Martin’s mother died from Huntington’s disease. So did her grandmother and a number of aunts, uncles, and cousins. Yet the Scottish woman didn’t get tested for this genetic ... Read more

May 8, 2018May 8, 2018

Blocking Gpr52 Receptor Improves Huntington’s Symptoms in Animal Models, Study Finds

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Targeting the Gpr52 receptor can reduce the levels of mutant huntingtin (HTT) proteins and improve Huntington’s disease symptoms, including walking problems, in animal models, a study suggests. The study, ... Read more

May 3, 2018May 3, 2018

Iron Buildup in Mitochondria of Brain Cells May Promote Huntington’s Progression

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Iron accumulation in the mitochondria of brain cells may drive Huntington’s disease progression, researchers report. Removing excess iron with an FDA-approved treatment was seen to rescue mitochondrial function and ... Read more

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