Category: Trial Updates

Latest Huntington News!

The EHDN Newsletter is here! Get updated on ongoing trials and Enroll-HD, read about Rob’s first meeting with the Huntington community and the situation for Huntington families in Venezuela. CONTENT Page 2 The Huntington’s disease minipig, Adela, is 10 Page 3 Giving families a place, a face and a voice Page 4 Update: Clinical trials…
Read more

EHDN News March

The European Huntington’s Disease Network (EHDN) has launched their March Newsletter. Find it here! In the March edition you can learn more about the Fellowship exchange programme and how you can apply.  Read about The Unwanted Inheritance – a documentary about a Huntington nursing home in Belgium – and get updated on clinical trials, Enroll-HD and research.…
Read more

New Study Announced Today

Today Roche announced that the first patient has entered the GENERATION HD1 study. A trial that will investigate the efficacy and safety of the huntingtin lowering drug RG6042 – formerly known as IONIS-HTTRx. Over the last couple of years, the safety of the drug and short term effects, have been measured in 46 participants. Now…
Read more

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…
Read more

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…
Read more

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.  

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…
Read more

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…
Read more

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…
Read more

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