Learn more about patient advocacy and how to influence!

Are you between 18 to 35, living in Europe and affected by a neurological disorder? Then you can participate in EFNA’s workshop! Register before September 21st.  Register here. The  European Federation  of  Neurological Associations  (EFNA)  is an  umbrella  group representing 20 pan-European neurology patient groups – including the European Huntington Association. There’s a 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 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.  

An exciting new therapy

Wave is currently testing a new treatment known as ‘Precision medicine’. The drug only targets the disease-causing protein and leaves the healthy protein alone. Video interview below! In July 2017, Wave Life Sciences started their clinical trial known as ‘Precision HD’. The trial is a so-called Phase I clinical trial Read more…

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 Read more…

You are invited to Vienna!

In September the European Huntington Association is arranging their Business Meeting in Vienna. This year the association wants to encourage as many family members as possible to participate. REGISTER HERE The EHA Business Meeting is taking place one day prior to the EHDN Plenary Meeting. The Business Meeting will happen Read more…