National Rare Disease Plan
On Thursday 3rd July 2014 Ministerfor 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,v
Chapelizod, Dublin 20.
Ph: (01) 6236414
Fax: (01) 6208663