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July 16, 2019July 16, 2019

Egypt Leads World in Huntington’s Prevalence, But Lacks Clinical Trials on the Disease, Report Says

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Egypt, the most populous country in the Arab world, has the highest prevalence of Huntington’s disease, yet this nation of 100 million is overlooked when it comes to research ... Read more

July 11, 2019July 11, 2019

Scientists Discover Two Distinct Symptom Profiles in HD Patients

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People with Huntington’s disease may have two different symptom profiles, a cognitive-motor and a psychiatric profile, associated with different clinical and neurobiological features. The findings of the study, “Specific ... Read more

July 9, 2019July 9, 2019

Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

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The challenges Vesna Aleksovska faced when she decided a decade ago to help fellow Macedonians with rare diseases were so daunting, they would have scared off all but the ... Read more

July 4, 2019July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

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It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

June 27, 2019June 27, 2019

Encouraging Brain Donations for Huntington’s Research Goal of HDSA and CHDI Foundation Partnership

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Encouraging the families of people affected by Huntington’s disease to donate, post-mortem, their brain and other organs so as to advance research into the disease and its possible treatments is the ... Read more

June 25, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials ... Read more

June 25, 2019June 25, 2019

Huntingtin’s Seeding Activity a Potential Early Biomarker of Huntington’s Disease, Study Says

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Measuring the seeding activity of mutant huntingtin (mHTT) protein — its ability to trigger protein aggregation — could be an early biomarker of Huntington’s disease with the potential for ... Read more

June 20, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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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, ... Read more

June 18, 2019June 18, 2019

Obsessive-compulsive, Perseverative Behaviors Prevalent, Particularly as Disease Progresses, Study Shows

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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 ... Read more

June 18, 2019June 17, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

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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 ... Read more

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