SHAYP Life was
awarded £45k by the Young Start Fund to start a project
called ‘HD Generations’. The 2 year project will focus on developing
a Youth Roadmap resource that can be used by YP to explore issues related to HD.

Question Title

* 1. Thinking about the ‘HD Generation’ project what best describes you?

young person

young carer

adult carer

parent

symptomatic

family member

professional

Other (please specify)

Question Title

* 2. Thinking about young people living in families affected by Huntington's Disease (HD), in your opinion how important an issue is:

	Less important	Quite important	Very important
Having accurate information and resources related to HD	Having accurate information and resources related to HD Less important	Having accurate information and resources related to HD Quite important	Having accurate information and resources related to HD Very important
Young people facing stigma and discrimination because of HD	Young people facing stigma and discrimination because of HD Less important	Young people facing stigma and discrimination because of HD Quite important	Young people facing stigma and discrimination because of HD Very important
Families being able to talk openly about HD	Families being able to talk openly about HD Less important	Families being able to talk openly about HD Quite important	Families being able to talk openly about HD Very important
Young people who care for others in HD families	Young people who care for others in HD families Less important	Young people who care for others in HD families Quite important	Young people who care for others in HD families Very important
Young people encountering ‘Social Disadvantage’ because of HD	Young people encountering ‘Social Disadvantage’ because of HD Less important	Young people encountering ‘Social Disadvantage’ because of HD Quite important	Young people encountering ‘Social Disadvantage’ because of HD Very important

Question Title

* 3. Please choose 3 topics that you think should have a chapter in the ‘HD Generations’ workbook.

Finding out and telling other people about HD

Getting information when you need it

Family life and HD

School, further education and careers

Young carers

Living with HD changes

Emotional wellbeing and coping Skills

Importance of opportunity and inclusion

Access to other HD related services

Living with genetic risk and testing

Family planning

Loss and bereavement

Being safe

Fostering and adoption

Question Title

* 4. Are there any issues not mentioned in Q3 that you think should be included?

Question Title

* 5. Thinking about the workbook, would you rather use an Electronic or Paper version?

Electronic

Paper

Other (please specify)

SHAYP Life was
awarded £45k by the Young Start Fund to start a project
called ‘HD Generations’. The 2 year project will focus on developing
a Youth Roadmap resource that can be used by YP to explore issues related to HD.

Question Title

* 1. Thinking about the ‘HD Generation’ project what best describes you?

Question Title

* 2. Thinking about young people living in families affected by Huntington's Disease (HD), in your opinion how important an issue is:

Question Title

* 3. Please choose 3 topics that you think should have a chapter in the ‘HD Generations’ workbook.

Question Title

* 4. Are there any issues not mentioned in Q3 that you think should be included?

Question Title

* 5. Thinking about the workbook, would you rather use an Electronic or Paper version?

Question Title

* 6. Any other comments?

Question Title

* 7. If you would like to be kept up to date with developments regarding HD Generations, then please leave your email address