Advocacy, Awareness, Media

Huntington’s disease is a relatively rare disease and one that it often misunderstood. There is a need for greater awareness of the impact of the disease on the person affected, their carer and their family so that people living with HD and their families receive appropriate support to manage their condition. 

Some families are understandable hesitant to speak openly about the condition due to fear of genetic discrimination from potential employers, insurers or mortgage providers. Increased awareness leads to a greater understanding among the extended family, friends and colleagues of those affected, health and social care providers, researchers, statutory services and the general public.

People impacted by HD are best placed to tell others about the disease and its effects. Sharing your own experience gives others an insight into the realities of living with HD, living at risk or providing care for a loved one. Reaching out and asking for assistance helps to share the burden HD can bring.

Increasing awareness and advocating on behalf of families affected by HD is a key activity of the Huntington’s Disease Association of Ireland.  We work with other groups and stakeholders to pursue equitable access to necessary treatments, services and supports.  Thank you to all those who support us in our work. Please share our HD Awareness Poster to help increase understanding.