Ms Patricia Towey:

The Huntington's Disease Association of Ireland receives HSE funding. We received €68,000 in 2014, but our funding has been reduced by 15% since 2008, making it very difficult to plan services. We have a part-time family support officer and she tries to facilitate support groups in Cork, Limerick, the west of Ireland and Dublin. She provides one-to-one support for people and in particular seeks to meet people when there is a diagnosis in a family or where a person is going through the predictive testing process.

Diagnostic testing is where symptoms have already emerged, but people can choose to find out whether they have the gene. They will develop the condition if they have it. The figures suggest that one fifth of people end up getting a predictive test result, while some pull out because they realise they do not want to know. Until there is modifying treatment in place, some people feel it is a difficult burden to bear. There are instances of amazing people internationally who have the HD gene involving themselves in research. They are great advocates.

There was a question on collaboration, and I note that there is a great deal of collaboration internationally between family members and researchers and clinicians. That is what we need to see happen in Ireland. It needs to be supported in particular. The European Huntington's Disease Network and the Cure Huntington's Disease Initiative in the USA have done amazing work. An advantage in the HD community is that researchers know who is likely to get the condition, which means there is a possibility of looking for biomarkers that may develop in advance of the appearance of symptoms. If a treatment emerges, people could access it earlier than would be the case with other neurological conditions.