EFNA Survey: need for increased awareness

A newly published survey conducted by EFNA, shows that young Europeans with neurological conditions lives with a fear of isolation and stigma. This demonstrate the lack of knowledge in the general population.  Sunday, July 22nd was World Brain Day. To celebrate the day the European Federation of Neurological Associations, EFNA, launched the results of their recent […]

Huntington’s Disease Youth Organization needs you!

HDYO is looking to hold a review meeting on the future direction of the Young Adult Working Group of EHDN at the conference in Vienna in Sept. The proposal is to change the direction of the Young Adult Working Group to be focused on Young People and Research.  This will take many forms including: How […]

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=”https://eurohuntington.org/wp-content/uploads/2018/07/EHDN-News-July2018.pdf”]

An exciting new therapy

[vc_row][vc_column][vc_column_text]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 – which means it is […]

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 […]

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 13 September and the EHDN […]

May is Huntington Disease Awareness Month

[vc_row][vc_column][vc_column_text]Over the last years, May have been Huntington Disease Awareness Month. Thanks to the Huntington Society of Canada buildings, monuments and statues has been lit up in blue and purple to raise awareness for Juvenile HD (in purple) and HD (in blue). Light up your home and share your photos on social media using #LightItUp4HD. […]

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 […]

Join us – HD on the Bike

[vc_row][vc_column][vc_column_text] Join us in creating awareness! The 18th of August the European Huntington Association will bike for Huntington’s Disease. And we invite all of you to join us. Everyone can join: if you’re directly affected by the disease, if you have a friend, a husband or a wife that’s affected by the disease, if you […]

One year anniversary!

One year ago Alzbeta Mühlbäck and the European Huntington Association established Ask the Doctor. Since then people have been asking questions about Huntington’s disease from all over the world. The idea behind Ask the Doctor was to provide a low threshold platform where questions related to Huntington’s Disease (HD) could be asked. Over the last […]