We work towards our mission by:
- Identifying the clinical needs of young adults who are at risk, HD gene carriers or non-gene carriers
- Facilitating participation in ongoing clinical studies
- Increasing the spread of information to young adults in the HD community
- Facilitating the establishment of young adult support networks for young adults in the HD community
We completed a survey of the the opinion of young adults from HD families about relevance and availability of information and support regarding several aspects of HD. The primary conclusions of the survey were that information about HD related topics and the availability of peer and professional support are very important for young adults from HD families. In addition, with the exception of general information about HD, or predictive testing, the vast majority of respondents stated that they did not receive enough information on other important topics, for instance regarding legal advice and they did not feel supported enough by healthcare professionals. HD research was considered to be of high value, though most did not participate in HD research.
- Braisch U, Martinez-Horta S, MacDonald M, Orth M. Important but not Enough -Information about HD Related Topics and Peer and Professional Support for Young Adults from HD Families. J Huntingtons Dis. 2016 Dec 15;5(4):379-387. PMID: 27983563
Genetic and lifestyle Project
Problem Statement: At present there is a lack of continuity regarding genetic testing guidelines across the globe.
Goal: Clinicians and patients will work together to achieve the minimum standards outlined in the protocol and guidelines of Genetic Testing and Counselling
Assumptions: Young people have different needs when deciding to go through the testing process and clinics are not always equipped to handle these needs. There is a lack of understanding by clinicians about how young people cope with life after a genetic test. As a result the support available is not adequate.
Facilitate involvement of Young Adults in Research
Problem Statement: Young people are not participating in research when opportunities are available
Goal: Increase young people knowledge on available studies so they can make an informed decision on participating in research
Assumptions: There is a lack of education geared towards young people about participation in clinical trials and how to get involved in research.
Scottish Huntington’s Association,
Executive Director HDYO