Author: Astri Arnesen

2019 ends with exciting results from Wave PRECISION-HD2 trial!

Today, December 30, Wave announced the first preliminary results from the their study PRECISION-HD2 . So far the results are very exciting and promising. It’s very encouraging to enter a new year with such exciting news from Wave. I look forward with optimism to the next steps in these trials. Astri Arnesen, President EHA In PRECISION-HD2…
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Precision HD trial update

The exciting trials Precision HD 1 and 2, continue to enroll participants. Wave Life Sciences expect to share the first results by the end of 2019. In the Huntingtin lowering trials, Wave Life Sciences only target the mutant Huntingtin protein. This is a completely unique approach.  Learn more: New Treatment? The initial timelines have been delayed by…
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Roche changes plans – Less lumbar punctures needed in HD trial

Roche announced today, March 21st 2019, that the procedures in the huntingtin lowering trial Generation HD will be changed. Instead of monthly lumbar punctures the participants will only be injected every second month. This means less burden on the participants and on the clinical sites. The reason for this extraordinary descision is analyzes of data…
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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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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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Update message from the Roche team

On her way to board a flight to Los Angeles Mai-Lise Nguyen, Patient Partnership Director at Roche, sent an update letter to all of us who are impatiently waiting for news about the upcoming trial.  Well, there are no concrete timeline presented yet, but the letter reassures that the preparations are in progress. Ms Nguyen…
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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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More positive data from the Ionis/Roche trial released today

Today Ionis and Roche have announced more details from the Huntingtin lowering trial.  The initial results was released in December last year and today at the CHDI conference in Palm Springs, more details from the trial results was presented.  The drug formely called IONIS-HTTRx  will from now on be named RG6042.  The drug was given…
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Milano taking HD needs into universal design

On June 29th the the HD Associations AICH Milano and Huntington Onlus opened a very exciting and innovative Exhibition at the famous art Exhibition venue Triennale Design Museum in Milano.  “Second Name: Huntington” contributes to shedding light on this rare disease for which there is still no cure. The exhibition is the last of a series of…
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2018 | Business meeting minutes

Minutes EHA General Assembly 2021 Find here the minutes form our General Assembly meeting in Amsterdam, 2021