Advocacy
HDAI is advocating for a Huntington's Disease Care Pathway to ensure integrated care for the physical, cognitive and psychological symptoms associated with Huntington's disease. We ask family members to join us in advocating for this service. Please consider speaking to your elected representatives to highlight the need for improved services. Our flyer has a number of Election Asks you can share with your TDs.
Multi-disciplinary specialist service are essential for HD-affected families. We want the service to provide specialist multi-disciplinary care, support, and advice so that individuals living with HD will have access to an appropriate coordinated care service to cater for all aspects of their illness, and family carers will receive the support they need.
Ireland's first HD Specialist Nurse was appointed in Beaumont Hospital in April 2024 and this service is needed for HD families in other regions.
In February 2023 we conducted a survey with families about their current experience of health and social care services. Here is the Survey Report: Too Many Barriers, Too Little Help: The Experience of People with HD and Their Families
Thank you to all who participated in this survey and to the HSE for providing funding.
Umbrella Activity
HDAI actively collaborates with national and international organisations to advocate on behalf of HD families. We make submissions to government departments and agencies and support campaigns of interest to the HD community. If you wish to support the HD community by speaking to your local constituency representatives or getting involved in relevant campaigns please let us know.
Membership of International organisations include:
Membership of national umbrella organisations include:
- Care Alliance - http://www.carealliance.ie/
- Carmichael Ireland - https://www.carmichaelireland.ie/about-us/
- Disability Federation of Ireland - https://www.disability-federation.ie/
- Rare Diseases Ireland - http://rdi.ie/
- Mental Health Reform - https://www.mentalhealthreform.ie/
- Neurological Alliance of Ireland - https://www.nai.ie/
Details of HDAI’s Information Seminars, Support Meetings and Annual Conference is available in our Events section. We also provide training and talks on ‘Understanding HD’ to health and social care professionals and other groups interested in HD. Please contact us for futher information.
Neurological Campaigns
The Neurological Alliance of Ireland (NAI), is an umbrella group with over thirty member groups involved in supporting people with neurological conditions and their families. The NAI represents its members on a number of platforms to promote awareness and highlight the needs of people with neurological conditions and their families. The NAI organises and promotes events for Brain Awareness Week in March https://www.loveyourbrain.ie/ . The NAI and some of its member groups including HDAI launched an ‘Invest in Neurology’ https://www.nai.ie/go/neurology_campaign campaign in March 2018. NAI also continues to advocate for improved neurorehabilitation services with their We Need Our Heads Examined https://www.nai.ie/go/campaign_centre campaign.
Rare Diseases
Rare Diseases Ireland (RDI) is an umbrella group involved in supporting people with rare diseases. HDAI is a member and is represented on the board of Rare Diseases Ireland which works as an alliance of voluntary groups, involved with genetics and other rare conditions. The RDI organises and promotes events for Rare Disease Day http://rdi.ie/rdd-2019/ (February 28th)
A National Rare Disease Office https://www.hse.ie/eng/about/who/cspd/ncps/rare-diseases/nrdo/ is based at the Mater Hospital, Dublin. It has responsibility for: the mapping and validation of Centres of Expertise, developing Orphanet and maintaining a rare disease helpline.
A National Rare Disease Plan for Ireland was launched in 2014.
Link to Rare Disorders without borders video - https://vimeo.com/channels/rdwb13/60956255
