Advocacy
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.
Membeship 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
