As we begin our new five-year strategy, this year’s annual report is a reflection on our key achievements over the past year.

This year we consulted with the community on what they wanted our priorities to be.

After an increase in fundraising last year investment has been made into the charity infrastructure this year, so we can continue our ambitious aims whilst continuing to offer support to the Huntington's disease community. 

Download the Impact Report

Key investment achievements included: 

  • The Helpline Adviser role quickly made an impact enabling people accessing the services the ability to speak to a person sooner. 
  • The Policy and Public Affairs Manager established positive relationships with Parliament, with Hilary Benn agreeing to be a Parliamentary Champion for us, leading to a Westminster Hall Debate in November 2022. To have a role that can help people advocate for Huntington’s disease is an exciting time, we want to be able to create change for people affected by Huntington’s disease.
  • A new youth worker and advisers means we can support more people and families.

Huntington's Disease Awareness Month

Our campaign for Huntington's Disease Awareness Month in 2022 was called Huntington’s in Mind, its objective was to raise awareness of mental health and Huntington’s disease. 

The three main target audiences the campaign wants to engage with:

  • Huntington’s community; those with symptoms, those at risk, those who are gene-positive, carers and family makers
  • Policy makers and parliamentarians
  • Health care professionals   

The campaign was used as a call to action across the year, raising the understanding that mental health is an important part of people affected by Huntington’s disease.

We celebrated two award wins:

This was for My Family Matters, a campaign involving the Alliance Partnership. The campaign took place in May 2021.

As we came to the end of our five year strategy, we began consultation on how people had found their support from our charity. The consultation included a questionnaire and a number of focus group sessions, all conducted by an external agency to prevent bias.

The results were positive with the charity receiving a Net Promoter Score ( a customer satisfaction score) of 75, meaning people are highly likely to recommend us.


As said by one participant:

“Facing this extremely difficult illness with an uncertain future ahead, we are confident in the knowledge that the Huntington Disease Association is beside us for this journey.”


The respondents used a mix of services showing the variety of ways people access our services.

Service users | Huntington's disease


Comments where people thought we could improve have been taken into consideration for the next strategy. This included an online chat or email service and difficulty in accessing the service for those for whom English is not their first language. Other feedback was the loss of face-to-face contact that many felt was needed, at the time of the survey some of the comments were made at times when we couldn't risk face-to-face situations due to Covid. However, it is good to understand how people would like to access our services when planning for the future.

Using information gained in this report, consulting with staff and trustees led to the creation of our new five-year strategy, our promise on how we will support anyone affected by Huntington's disease.

Next - Goal one