On Thursday 3rd July 2014 Minister for Health Dr James Reilly launched the new National Rare Disease Plan. The key recommendations in the Nation Plan for Rare Diseases include:
- The establishment of a National Clinical Programme for Rare Diseases.
- The establishment of a National office for Rare Diseases.
- Residential and respite care to be available for children with Rare diseases.
- Applications for the use of fair and transparent means to access orphan medicines and technologies in hospitals through the national budget.
- The HSE and NGOs to provide ongoing support for people living with rare diseases and the promotion of awareness of rare diseases.
- The development of a rare disease research network to enhance the quality and relevance of rare disease research in Ireland.
- Patient empowerment and the support of patient organisations in the establishment of monitoring and reporting mechanisms on the rare disease plan.
Click on the image on the right to download a PDF version of the full report. We at MDI also have a few hard copies at our head office in Chapelizod. If anyone would like one or for further details please contact:
Information and Research Officer,
Muscular Dystrophy Ireland,
75 Lucan Road,
Ph: (01) 6236414
Fax: (01) 6208663