Author: Maiken Arnesen

EHA19: An Amazing Conference

October 4-6, the European Huntington Association conference was held in Bucharest. 220 professionals and family members were gathered in Romania to meet others and to learn more about Huntington’s disease.  Over the weekend, more than 30 sessions and workshops took place at the Ramada Bucharest Convention Center. In addition, there were important meetings taking place…
Read more

HD-COPE: Meeting with European patient representatives

Thursday afternoon, October 3, the European HD-COPE members and the European Huntington Association board met in Bucharest, Romania. They talked about patient advocacy and latest Huntington news.  The main objective of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) is to shape research by being the voice of Huntington’s disease family members. Their aim is…
Read more

New huntingtin lowering treatment?

There are currently many pharmaceutical companies working on huntingtin lowering drugs. A new study from Sangamo Therapeutics and CHDI foundation might show a promising new huntingtin lowering tool.  There is a lot of Huntington’s disease research going on at the moment. Among other things, PTC Therapeutics is working on a pill – a small molecule…
Read more

New project: e-health for Huntington’s patients and families

In order to ensure good care for Huntington patients and their families, the HEALTHE-RND project aims at developing an e-health platform. The platform will ensure access to help and information – regardless of where people live. Written by Alzbeta Mühlbäck, MD What’s it all about?  Huntington’s disease (HD) require intensive cooperation between different medical disciplines and…
Read more

“It could be the beginning of a great new adventure!”

It was summer 2017 when I stumbled on the webpage of the European Huntington Association. At that time I was taking my first steps in the Huntington world. Having tested positive for the gene a few years earlier, I was now longing to be part of a community. Written by Rob Haselberg, first published in…
Read more

Sleep better at night

Many people with Huntington’s disease have trouble sleeping. Managing or treating the problems directly may be beneficial. Find some simple tips on how to improve sleep below. Short-term sleep deprivation has no lasting damage, but it impacts mood. Without enough sleep, people become irritable, unreasonable and short-tempered. At HDBuzz we can read that people with Huntington frequently suffer from sleep abnormalities and…
Read more

Safety with style

Ribcap was formed over 10 years ago to provide protective headgear that works to combat various neurological conditions – without compromising personal style. The headgear is designed for everyone facing all sorts of life challenges.

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

We want your poster!

Do you have a good idea? Have you conducted interesting research? Or learned anything meaningful through your work? We want to know about it! Bring your poster to EHA Conference 2019! How? 1) Write a short description of your poster and send it to Print your poster and bring it to our conference in…
Read more

Exhibit your pictures during our conference!

Do you have a camera? Or maybe a friend that has one? Take part in our photo exhibition during our conference! We want people to see the many faces of Huntington’s disease! Everyone that’s affected by Huntington’s disease can participate: If you are a family member of someone with the disease, if you are affected…
Read more