Author: eurohuntington

Huntington’s Disease occupational therapist shares expertise with top scientists at The Hague

Kirsty Page, an occupational therapist from Badby Park, a care home for adults with complex needs, has been sharing her clinical knowledge on Huntington’s Disease with scientists at the European Huntington’s Disease Network (EHDN). She was the only occupational therapist from the UK to attend the international conference which was held at The Hague in…
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Review Finds Psychiatric and Behavioral Problems in Huntington’s are often Ignored in Research

 A recent review summarizes the scientific literature on behavioral and psychiatric symptoms of Huntington’s disease, noting that plenty of research is still needed to better understand and treat such symptoms, which traditionally have taken second stage to the disease’s movement problems. The review, “Changes in mental state and behaviour in Huntington’s disease,” published in the…
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The PRIDE-HD trial did NOT show that Pridopidine slows the progression of Huntington’s disease

A recent press release from Teva Pharmaceuticals has the HD community excited, claiming “Pridopidine Demonstrates Slowing of Progression of Huntington Disease in PRIDE-HD Study”. What’s pridopidine, and what can we really say about HD progression in patients treated with it? A brief history of pridopidine in HD Pridopidine is a drug with a long history…
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Join EHA at the World Orphan Drug Congress (WODC) Europe 2016

WODC, the largest and most established industry event on rare diseases and orphan drugs in Europe, is dedicated to fostering partnerships between industry, governments, payers, investors and patients through patient support groups. Regardless of whether your interest lies in research, clinical development, patient access, global pricing and reimbursement, or just to engage with patient advocacy…
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EHDN 2016

News from the European Huntington’s Disease Network (EHDN) Plenary Meeting 2016

Experts in the field of Huntington’s disease research from across the globe gathered at the World Forum in The Hague, Netherlands, between 16 and 18 September for the European Huntington’s Disease Network (EHDN) Plenary Meeting. Attendees heard from eminent speakers from scientific and research backgrounds who delivered presentations on progress in current research, alongside updates…
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Participants at the EHA business meeting

The European Huntington Association: Business meeting in The Hague

The Hague is the third largest city in the Netherlands. This September an important meeting took place in the charming city. While the cyclists passed a building in the middle of the city center, forty-two people from nineteen different countries gathered inside.  Some of them were personally affected by Huntington’s disease while others were health…
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Ultra-rare mutations highlight the importance of the HD gene in brain development

A relatively new technology called exome sequencing has identified a few families with novel mutations in their HD genes. These are different than the mutation that causes HD, but allow researchers to better understand the normal role of the HD gene. Normal HD gene function The mutation that causes HD instructs brain cells to make…
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Group skydive in aid of Huntington’s disease research at Plymouth University

A group of people whose lives are touched by Huntington’s disease took part in a skydive to raise money for important research into the condition at Plymouth University Peninsula Schools of Medicine and Dentistry (PUPSMD). The team of six was led by Charly Honey, 24, who has been diagnosed with Huntington’s disease, and included John…
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A support system gone wrong – glial cells contribute to HD symptoms

A new piece of research has implicated a type of brain cells called glia in the development of HD symptoms. Regular mice injected with glial cells carrying the mutant huntingtin gene in the study developed symptoms associated with HD. Interestingly, this influence appears to work both ways — a mild reduction in disease symptoms was…
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Slightly long CAG repeats are more common than we thought

Everyone with Huntington’s disease has inherited the same type of mutation from their mother or father, an extra-long repetitive stretch of the sequence C-A-G in their HD gene. But the length of the mutation varies between individuals, and longer repeats are associated with earlier onset of symptoms. A huge new international study reveals that slightly…
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