There’s a lot of excellent guidance available for professionals working with people with Huntington’s disease and their families. You’ll find some useful best practice guides in the downloads on this page.
If you don’t find what you’re looking for on this page, get in touch – we’re here to help.
A carer’s guide
A teacher’s guide
A young adult’s guide
Advance Decision to Refuse Treatment (ADRT) (Form to go with ADRT fact sheet)
Advice on life assurance, pensions, mortgages etc.
Checklist for choosing a care home
Eating and swallowing difficulties
General information about Huntington’s disease and the Huntington’s Disease Association
Huntington’s disease and diet
Huntington’s disease and driving
Huntington’s disease and the law
Information for teenagers
Predictive testing for Huntington’s disease
Seating equipment and adaptations
Talking to children about Huntington’s disease
The importance of dental care
The European Huntington Association holds a wide range of up to date information for Physiotherapists who are working with people with Huntington’s. Their key document for physiotherapists is their Physiotherapy Clinical Guidelines.
Exercise and Physical Activity Resources:
Move to Exercise DVD clips and associated booklet
This exercise programme has been developed by physiotherapists specifically for people with movement disorders. Exercise is not without its risks and this or any other exercise programme has potential to cause injury. To reduce the risk of injury, consult your doctor or physiotherapist before beginning this exercise programme. Your physiotherapist should be able to help you identify which exercises will be most beneficial for you or if you should modify or omit any of the exercises in the DVD. The exercises presented here are in no way intended as a substitute for medical consultation; the authors and producers disclaim any liability from and in connection with this program. As with any exercise programme, if at any point during your work out you begin to feel faint, dizzy or have physical discomfort, you should stop immediately and seek medical advice.
ENGAGE-HD physical activity workbook
This workbook is intended to be used to support people with Huntington's to plan their regular physical activity. It also included sections on goal setting and resources. It is suitable to be used alongside the Move to Exercise DVD programme.
We would love to hear your feedback on these resources which Cardiff University have kindly agreed to us sharing. If you have any comments please contact firstname.lastname@example.org