Category: Research

Germany and UK clinics take part in exciting trial

Roche Natural History study will soon start in UK and Germany. Over a period of 15 months, participants will be observed to measure the progression of Huntington’s Disease. Following the observation, all participants will be offered the Huntingtin Lowering drug RG6042. Three clinics in Germany and 4 in the UK will soon start recruiting participants for the…
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New findings indicate that Juvenile Huntington's should be separated into two distinct categories, which in turn may be treated differently. Children with a long mutation length shows a faster rate of disease progression compared to adults and children with a shorter length. Today The Lancet Neurology, a part of The Lancet one of the world's oldest, most…
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Two important meetings in Vienna

From 13thto 16thof September, to important meetings took place in Vienna: the EHA Business Meeting and the EHDN Plenary Meeting. During the weekend EHA’s board was re-elected and over 1000 participants got updated on the latest Huntington research. Pictures below! The European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70…
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Accelerated evaluation of drug

The European Medicines Agency has acknowledged the huntingtin lowering drug, RG6042 (previously known as IONIS-HTTRx), as a possible therapy that may significantly improve patients’ quality of life and granted Priority Medicine designation. Read more: GROUNDBREAKING RESULTS! In other words, with the “PRIME” (PRIority MEdicine) designation, the European Medicines Agency will assist the pharmaceutical company in making…
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News from EHDN

Read about the Registery journey from the very beginning to the more recent successor study Enroll-HD. Cristina Ferreira gives you an insider’s view of her personal experiences with Regisery in an inspiring interview- definitely worth a read so don’t miss out on this interesting newsletter.   [pdf-embedder url=””]

A letter from Roche

Roche Pharmaceuticals is currently working on their Huntingtin Lowering drug, RG6042 (formerly known as IONIS-HTTRx). In the letter Patient Partnership Director, Mai-Lise Nguyen, write about the company and their philosophy on working with the HD patient community. On behalf of the Roche HD team Nguyen writes: – Since taking over development of RG6042 from Ionis…
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Amazing news – drug seems to improve symptoms

Yesterday Ionis Pharmaceutical presented new data from their Huntingtin lowering trial, IONIS-HTTRx. The data demonstrates a relationship between reduction of the disease-causing  Huntingtin protein and improved symptoms for people with early stage Huntington’s Disease. After 3 months of treatment, the patients seems to benefit from the drug – now known as RG6042. This is very…
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HD-COPE: Huge progress for patient representation

The first weekend in February was historical: it was the first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE). They learned about research and met one of the largest pharmaceutical companies in the world. Watch a video from the London meeting below! Around thirty people had gathered at the Holiday Inn Hotel in…
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Wave partners with Takeda – HD research strengthened

The biotechnology company Wave Life Sciences strengthens their efforts in Huntington’s disease. In February they announced  their collaboration with Takeda, a Japanese pharmaceutical company with long and solid traditions.  The partnership enables Wave to continue their work in an even larger scale. The Japanese pharma company is listed with around 7000 employees and a paid…
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Huntington News – now subtitled!

News and updates from the latest CHDI Therapeutics conferences have now been subtitled! In the video you can learn more about ongoing trials, stem cells, marijuana as treatment and HD-COPE. Click on the flag or find the video below and chose subtitles by clicking "CC" in the lower right corner. News from CHDI's Therapeutics Conferences