I propose to answer Questions Nos. 337 and 346 together.
Huntington's Disease (HD) is a genetic, neurological disorder and is classified as a rare disease. The supports provided by the Health Service Executive (HSE) to people with HD involve a multi-disciplinary team approach to the provision of health and personal supports and incorporate assisted living services, including Personal Assistant Services, Aids & Appliances and hospital, primary care and community services.
The Huntington's Disease Association of Ireland (HDAI), provides consultation, information and individualised support to those diagnosed with Huntington's Disease, their families and their health care team. The HSE is committed to working in partnership with voluntary disability service providers, including HDAI, to ensure that all of the resources available for people with disabilities are used in the most effective manner possible. The HSE recognises the valuable contribution of the HDAI and approved a grant of just over €68,000 for 2012 to support the work of the organisation. The HDAI is a member of the Neurological Alliance of Ireland and the Disability Federation of Ireland. Both umbrella organisations provide support to the HDAI and are supported by the State through funding from the Health Service Executive.
I established a National Steering Group to develop a policy framework for the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and a patient centred approach. The policy will operate over a five year period, take account of the EU Council Recommendations on Rare Diseases (2009) and define priority actions subject to resource availability. It is envisaged that the main added value of European Reference Networks and therefore of the Centres of Expertise will be to facilitate improvements in access to diagnosis and delivery of high-quality, accessible and cost-effective healthcare in the case of patients who have a medical condition requiring a particular concentration of expertise or resources, particularly in medical domains where expertise is rare. Work is ongoing on at EU level on the development of criteria, structures and governance arrangements for such networks and the Department of Health is participating in the relevant Expert Groups.
My Department is asking the HSE to inform the Deputies in relation to the provision of services for people with Huntington’s Disease in the Western region.