The prevalence of Huntington’s disease (HD) is about 4-10 per 100.000 with roughly 4-5 times as many – in Europe this is about 150.000 people – being at risk of developing the disease. At present we witness an increasing number of clinical trials with novel therapeutics. This gives us much hope that the treatment of those with HD will improve in the foreseeable future. The Holy Grail, however, would be something that prevented HD in someone carrying the gene. Inevitably, this will have to involve healthy individuals carrying the HD gene in clinical trials. There is therefore an increasing interest/need to study this population of individuals including the development of novel tools for clinical assessment in these future trials. Yet young adults who are ‘at-risk’, HD gene carriers or have had a negative genetic test are often overlooked in the services which are provided for people with HD,  and few young adults are currently participating in ongoing clinical studies such as REGISTRY.

At risk also means these individuals grow up in a family with HD under the Damocles’ sword of having, or not, inherited the HD gene mutation. Young adults with HD in the family often feel ‘alone in the midst of others’ (Sharpel et al 2008); while they have friends, they describe them as being unable to really understand what it’s like to live with HD. This population needs genetic counselling, advice on important life decisions and treatment of medical conditions. We know too little about other needs. Better knowledge may inform best clinical practice and a standard set up of a clinic dedicated to these individuals. Support networks for young adults are missing in many countries.  The YAWG itself will not form a support group, but would aim to enable young adults to create support networks in the countries they represent

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Andrea Horta, Spain