Huntington’s disease in Bangladesh

The Lancet has published a very interesting article about HD in Bangladesh that we want to share with you! You can either read the article below or here Huntington’s disease is an autosomal dominant neurodegenerative disorder characterised by chorea, dystonia, incoordination, cognitive decline, and behavioural difficulties.1 Genetic testing is needed to confirm the clinical diagnosis, but […]

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First human gene therapy trial in Huntington’s disease

Huntingtin-lowering The focus of the first trial is safety and tolerability – finding out whether there any harmful or unpleasant effects of receiving AMT-130 treatment. UniQure also includes efficacy in the stated aims of the study: that means getting an idea of whether the treatment is doing what it’s supposed to do. In the broader sense, that means slowing the […]

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Pridopidine

Pridopidine is back! Dr. Michael Hayden and his company Prilena, just announced that the Pridopidine clinical trial will be restarted!   They have now secured the needed funds to do a phase 3 clinical trial in HD with the Pridopidine.  The study will be done in North America and Europe with several hundred participants! Pridopidine has a long […]

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New Knowledge about the Huntingtin gene

Breaking news! DURHAM, N.C. — A Duke University research team has identified a new function of a gene called huntingtin, a mutation of which underlies the progressive neurodegenerative disorder known as Huntington’s Disease. Using genetic mouse models, they have discovered that neurons in the striatum, a brain area involved in controlling movement, require the huntingtin […]

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Wave Life Sciences Announces Topline Data and Addition of Higher Dose Cohort in Ongoing Phase 1b/2a PRECISION-HD2 Trial in Huntington’s Disease!

Wave and Roche neck and neck! This is very good news for Huntingtonians world-wide! We attended a very exciting webcast yesterday!  Wave broke some very interesting news and the first part of their trial with Precision HD2 is very promising, says Svein Olaf Olsen President of the International Huntington Association. While Roche´s trial drug attacks […]

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Update from Stronger together, better together conference

“Strange strategy from Roche!” Svein Olaf Olsen- President of the International Huntington Association The President of The International Huntington Association participated at the conference organized by The European Huntington Association in Bucharest, Romania the 4th to the 6th of October.  On behalf of the global HD community, IHA President Svein Olaf Olsen greeted the 230 participants. The […]

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A letter from Roche

The enrolment in the Phase III trial GENERATION HD1 study has been increased from 660 to 801 participants worldwide, as well as being extended to China.This change does not impact participants already enrolled in the study, but it allows for additional patients to enrol in the three existing study groups. By enrolling more participants, Roche […]

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Update: RG6042 Phase III GENERATION HD1 study re-opens

Dear global patient community partners, Following your previous request to be kept up to date on the clinical development programme for RG6042 for Huntington’s disease, we would like to provide an update on the status of the Phase III GENERATION HD1 study (ClinicalTrials.gov ID: NCT03761849), including participating countries in Asia-Pacific, Europe, North America and South America.  […]

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The inaugural conference of Huntington Disease Society of India

This picture was taken at the Inaugural conference of Huntington Disease Society of India. Among others, Svein Olaf Olsen – president of the International Huntington Association, Astri Arnesen, President of the European Huntington Association and Dr Ralf Reilmann, the founding director of the George-Huntington-Institute attended this important conference. At the conference, Neurologists and family members […]

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E-health for Huntington’s patients and families

What’s is Healthe-RND?  Huntington’s disease (HD) requires intensive cooperation between different medical disciplines and services, so-called ‘multidisciplinary care’.  Given the scarcity of resources, this is not an easy task, which is why demand and reality often fall apart.  In order to be less dependent on the patients’ distance from a Huntington centre, there is an […]

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