The brand new book Harry needs a hug helps children to understand how to deal with Huntington’s disease. The book is presented in an informative, sensitive and easy to understand way. The aim of Harry needs a hug is to help children understand what living in a family affected by Huntington’s disease means. The blurb of…
Read more
Due to instability in the gene, Huntington’s disease symptoms may begin earlier in life. By targeting proteins involved in DNA damage repair, we might be able to reduce the levels of instability and delay disease progression. Many repair proteins work to maintain the machinery that copies DNA. One of these proteins – so-called Huntington’s disease…
Read more
The European Huntington’s Disease Network (EHDN) Newsletter appears three times a year. This year’s second edition is dedicated to the impact of Covid-19: the problems it has created but also the adaptability and the positive trends. In the newsletter, you can learn more about telemedicine. Here, Alzbeta Mühlbäck, our own doctor, states: – Though we…
Read more
On Tuesday 25 August, Wave Life Sciences is organising a webcast where they are planning to share exciting updates on their platform. In a recent press release, the company also announced that the results of their huntingtin lowering trials are expected in the first quarter of 2021. 10 August 2020, Wave Life Sciences issued a…
Read more
Financial concerns, pressure on family life, but also closeness to beloved ones and support. Here is how coronavirus pandemic has affected Huntington families in Italy and Scotland. The Scottish Huntington’s Association conducted a study with 25 young people living with Huntington’s disease, while La Lega Italiana Ricerca Huntington (LIRH) studied the impact of COVID-19 on…
Read more
September 11 from 14:00 – 18:00 CEST, the European Huntington’s Disease Network will host Virtual Bridging Event where you can learn more about Huntington’s disease research and trials. Sign up now! Every other year, the European Huntington’s Disease Network (EHDN) hosts one of the world’s largest conferences dedicated solely to Huntington’s disease (HD). Despite taking a different form…
Read more
The 6th Congress of the European Academy of Neurology (EAN), and First Virtual Congress, was the biggest meeting in neurology this year with more than 40.000 online participants. You can now watch all of the sessions online for a limited time and free of charge! The Congress was planned for May in Paris. Due to COVID-19,…
Read more
Throughout the year, the European Reference Network on Rare Neurological Diseases (ERN-RND) provides educational webinars on rare diseases – free and open to everyone. The webinars are a collaboration between ERN-RND and the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The webinars will treat topics related to rare diseases and include…
Read more
The first two patients in uniQure’s in-human gene therapy trial for Huntington’s disease (HD) have now been treated. The dosing of the drug called AMT-130 in the trial marks a significant milestone for uniQure and for Huntington patients in need of treatment options. At this stage, safety, tolerance and efficacy of the treatment are being tested. 26…
Read more
Two days ago, the European Huntington Association was granted €3,000 from European Federation of Neurological Associations and their #BrainLifeGoals Project! The money will be used to develop HealthE-RND, an online platform to ensure access to support throughout Europe. In addition, the project is funded by the EU Joint Programme – Neurodegenerative Disease Research. The project aims to: 1) Develop…
Read more
