Together we will build a better life for people affected by Huntington's disease. An important part of this work is influencing people. We influence through campaigning.

With so many decisions about the treatment of Huntington's disease made by the government and politicians we have started working with people who can really make a difference


Writing to your MP

We are so grateful for everyone who has written to their MP. If this is something you would be interested in doing it, please get in touch if you require support.


A member of the community recently wrote a letter to their local MP and they have received a letter back from Helen Whatley MP. It is great to see that as a community our voices are being heard. You can read the response letter below.


Read the letter

Our policy work is based on five main campaign asks:

Mental Health Services Access

Access to community mental health services when psychiatric symptoms are present

Specialist Care Coordinator

A care coordinator in each area to ensure people can navigate the many professionals they need and those professionals have knowledge and understanding of this disease

NICE Guidelines

Specific NICE guidelines for Huntington's disease to ensure there is consistent care for this complex illness

Armed Forces review

A review of the blanket refusal to entry to the armed forces unless have had a negative predictive test

Benefits review

The uplifting of benefits to reflect inflation as many people with Huntington's disease have higher energy and nutritional needs