We began the new financial year with the launch of our strategy. 


An animation was created to launch the strategy, sharing how we will make a difference.

The promises in this strategy will shape our future work. We looked at our Vision as a charity, working with the community in partnership has brought many benefits and we wanted to include this element in our updated vision by including the word ‘Together’, acknowledging that it is only by working with others we will achieve our vision.


“Together we will build a better life for anyone affected by Huntington’s disease.”


Our mission includes our commitment to advocating for change through campaigning, our continued commitment to providing education and support and demonstrating our commitment to working with the community to shape our mission.

To enable everyone affected by Huntington's disease to live life to their full potential by:

Huntington's disease charity impact


During this time of reflection, we looked at our values, on what drives us as an organisation, again taking feedback from the community we updated and added a new value, Inspirational.


Our values are:

  • Tenacious
  • Experienced
  • Compassionate
  • Inclusive
  • Inspirational

Throughout the consultation process and throughout our work we often commented how it was the community that drove us, we reflected this with our new strapline to launch the strategy.

 “Inspired by our community” 


Our five goals for the next five years are:

  • We will ensure everyone affected by Huntington's disease gets the care and support they need
  • We will help make each day with Huntington's disease the best possible day
  • We will make sure the voices of people affected by Huntington's disease are heard and are at the heart of everything we do
  • We will not rest until everyone with Huntington's disease has access to treatments
  • We will be a resilient charity


Plans for 2023/24


We have recently submitted a bid to the lottery service to improve the expansion of the Huntington Disease Association Youth Service (HDYES), following on from the success of last year’s Jingle Jam fundraising we have big plans for the development of the service that includes

  • Developing co-production services
  • Develop psychological support sessions with children and young people, including drawing and talking therapy and narrative therapy sessions
  • Deliver HD Youth Voice co-production sessions, embedding our youth leadership and collaboration programme and producing new information resources for HDYES

We will continue to develop our resources adding new content using co-production principles so our information is developed with the voices of people with Huntington’s.


We will work to increase the reach of all communication through all relevant social media, the website and online communications. Whilst increasing reach we will increase awareness of Huntington's disease. We will continue to develop our Ambassadors scheme so that people with Huntington’s can share their stories. We will continue to fight for a better future, making every day the best possible day with our campaign work. We will prioritise mental health and NICE guidelines and work with our parliamentary champion to gain more support in Parliament and the House of Lords.


We will continue working with other charities to ensure we have a louder voice and work to influence policymakers to address concerns of the community on concerns such as the increase in cost of living, access to appropriate treatment at the right time and access to mental health services. 


Our development of the Advisory service remains a top priority, ensuring we have the right people to offer services throughout England and Wales. Understanding the complexity of Huntington’s disease and working with multiple agencies to ensure consistent care will remain a top priority of the Advisory Service. The team will expand its educational offering through the recruitment of an Education Lead, as we seek to improve professionals' understanding of Huntington’s disease. 


We will continue to offer in-person events where we can, although as are many other companies these can be affected by external factors such as train strikes, and adverse weather events. We have already booked our AGM and Community Conference to be held at the Radisson Blu Hotel, Derby and we are looking forward to an inspiring weekend of talks and events.

We plan to embrace the power of fundraising this year by introducing creative ways to fundraise, through gaming ( after the success of this year’s Jingle Jam) and have partnered with Run for Charity to be able to offer a wider selection of events for people. We want to ensure giving is easy fro people to do and are working with GOODPAYE to streamline payroll giving. We are developing the website to simplify the donation process.


As we continue to work with researchers and pharmaceutical companies to help find a cure and access to drugs to help treat the symptoms of Huntington’s disease we are driven by the resilience of the people we work with. We can not thank the community who tirelessly campaign with us and fundraise for us.

Annual accounts and reports 

You can read and download all the reports below.

Download governance

Download independent auditors

Download financial support