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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

Obsessive-compulsive and perseverative behaviors occur frequently among people with Huntington’s disease, particularly as the disorder progresses, a review analysis shows. Researchers say differentiating between these two behaviors — which many family members find highly problematic to handle — may be beneficial for managing and treating symptoms, and supporting caregivers.

People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…

Most people at risk for Huntington’s decide not to undergo genetic testing for the disease due to the lack of effective treatment — and because they can’t unlearn the knowledge that they may have the neurodegenerative disorder, a study shows. Researchers say choosing not to know if one is…

Mutations in the huntingtin gene may alter the interactions between the huntingtin protein and a protein called Rac1 in the early stages of Huntington’s disease, which may affect the way nerve cells communicate, a study has found. The study, “Rac1 Activity Is Modulated by…

Mutant huntingtin, the protein involved in Huntington’s disease, travels from one neuron to another using a network of tunnels built by a protein called Rhes, a study finds. The study, “Rhes travels from cell to cell and transports Huntington disease protein via TNT-like protrusion,” was published in the…

RG6042, formerly called IONIS-HTTRx, a potential therapy for Huntington’s disease, was able to reduce the levels of mutant huntingtin (mHTT) protein in early-stage patients, according to results from a Phase 1/2 clinical trial. Trial results were published in the study, “Targeting Huntingtin Expression in Patients with…

In a newly published set of guidelines, experts give suggestions for the management of some of the behavioral symptoms of Huntington’s disease. By making these guidelines available to both specialists and non-specialists, the hope is that better care and support can be given more consistently to Huntington’s patients and their…

Narrative interventions can help provide support to individuals who are carriers of HTT gene mutations linked to Huntington’s disease, a study shows. The study, “Improving follow up after predictive testing in Huntington’s disease: evaluating a genetic counselling narrative group session,” was published in the…

A newly developed smartphone application, called the Neural Impairment Test Suite app, can run a series of tests and calculate the probability that a user is displaying early symptoms of Huntington’s disease. Developed by a group of researchers at the Kaunas University of Technology (KTU) in…