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Useful Links
- Angelman Ireland
- Ataxia UK
- Carers NI
- Clic Sargent
- Consultation on the UK plan for rare diseases
- Contact a Family
- Eurodis- Rare Diseases Europe
- Genetics and Rare Disorders Organisation
- Huntington's Disease Association Northern Ireland
- IPPOSI
- Jennifer Trust for Spinal Muscular Atrophy
- Medical Research Charities Group
- MND Association
- MPS Society
- MSA Trust
- Muscular Dystrophy Campaign
- Myasthenia Gravis Association
- Neuroacanthocytosis Advocacy
- Neuroblastoma Alliance
- Patient and Client Council
- Porphyria
- PSP Association
- PWSA
- Rare Disease Day
- Rare Disease Day's YouTube channel
- RDUK
- SHINE
- Syringomyelia Arnold Chari Association
- Thalidomide Trust
- Tuberous Sclerosis Association
- Wilson Disease Association
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Tag Archives: PCC report
Lift off!
NIRDP was formally launched on Rare Disease day with much support from patients, families, health professionals and politicians. We were delighted that the NI Minister for Health, Social Services and Public Safety was able to participate in the event- cutting cake, … Continue reading
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Tagged launch, PCC report, Rare Disease Day, UK Plan for Rare Disease Consultation
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It’s Rare Disease Day — time for a launch or two!
Local advocates call for action on international Rare Disease Day as shocking new report highlights shortcomings in Health and Social Care for people with rare diseases A new report launched by the Patient and Client Council at Stormont today to … Continue reading