We are committed to helping people and families living with Huntington’s – they remain at the heart of everything we do.
Our unique position means we can support people with Huntington’s now whilst championing the needs of the community for the future. For the first time, developments in Huntington’s disease research offers a glimmer of hope for a potential treatment. Our understanding of the disease is improving all the time and we have a key role to play in keeping the Huntington’s community informed. Until there is an effective treatment, our priority will be to develop a better understanding of Huntington’s and improve knowledge and skills in our community and beyond which will lead to better care and support for families.
Our strategy describes what we must do to fulfil our mission. It demonstrates how we will continue to help people affected by Huntington’s to access quality care whilst expanding the ways that we can provide information, support, education and influence decision makers. We are aware that our goals are ambitious but we will work tirelessly to achieve them but we can’t do this alone. We will work with the Huntington’s community, partners and funders to make this vision a reality.
The following six goals form the basis of our strategic plan for the next five years:
The quality of care and support available throughout England and Wales is inconsistent. We will do all we can to ensure those affected by Huntington’s disease can access the care and support they need.
Huntington’s disease is a rare illness which means many professionals have a lack of understanding of the impact of the disease and its symptoms. We are committed to improving this.
The Huntington’s community knows the complex nature and challenges of living under the shadow of Huntington’s. They are best placed to support others facing similar situations. Likewise, their expert knowledge is invaluable in helping us to develop resources and inform our work.
A lack of awareness of Huntington’s within the general public is one of the biggest frustrations our community has told us about. We want to improve understanding of Huntington's and how the HDA can help.
As a charity with a small staff team, we need to ensure we have the appropriate resources, strategies and processes in place to work as efficiently and effectively as we can, to best support people affected by Huntington’s and the professionals involved in their care.
As a key organisation supporting people affected by the disease in England and Wales, we are best placed to gather evidence to help inform research priorities and provide pharmaceutical companies with family perspectives. We are a key link between the researchers and pharmaceutical companies and those affected by Huntington’s. We can provide reliable and understandable guidance about advances and participation opportunities in research.