We are launching “Moving Forward”. The new project aims at including people from Huntington’s disease families in drug development by facilitating an active and long-lasting commitment from patients and family members. Written by Filipa Júlio, Project Manager in Moving Forward Between September 2016 and December 2019, the European Huntington Association (EHA) has run multiple European and…
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The HEATED Project’s main aim is to ensure equal access to Huntington’s disease drugs by identifying barriers and overcoming them. The task force is therefore calling for more people to get involved. The HEATED Project is a task force under European Huntington’s Disease Network (EHDN). Their main objective is to ensure equal access to drugs…
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Initiated by the Huntington’s Disease Association of Cyprus, dental hygienist and newly elected chairperson of the Swedish Huntington Association, Annette Carlsson, held a webinar on oral care and Huntington’s disease 8th of October. Resources below! More than sixty people attended the webinar to learn more about oral care in people with Huntington’s disease. Among the…
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Did you miss any of our live webinars? Find more information and recordings below: Oral Care & Huntington’s: Keeping the mouth healthy 8 October | 11:00-12:30 Central European TimeMore information Family Involvement in Drug Development: Where are we now? 14 October | 19:00-20:30 Central European TimeRECORDED WEBINARMore information Running an Association During a Pandemic 21 October | 19:00-20:30 Central European TimeRECORDED WEBINARMore…
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In August, two Huntington’s disease meetings took place in Russia. During the meetings, Huntington families learned more about the disease, treatment and care. In Russia, the Huntington’s disease association Orphan People have teamed up with health care workers and scientists and established “Good to Live”. The initiative is a “school of health” for Russian Huntington’s disease families. …
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Friday, 18 September, the first ever Huntington meeting will take place in Iceland. The meeting can be attended both online and in person, and it is open to everyone who understands Icelandic. Here is an interview with the woman behind the meeting: – To start off: What is your name and what is your role in this meeting? Vigdis Stefansdottir. I am a genetic…
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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…
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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…
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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…
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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…
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