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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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Twitter Updates
Tag Archives: Rare Disease Day
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
29th February, International Rare Disease Day
Click the link to see what’s going on around the world- watch the videos, learn the flash mob moves. Be part of Rare Disease Day!
Welcome to the NI Rare Disease Partnership
Who are we? We are a not for profit organisation, bringing together those living with a rare disease and organisations representing them: clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policy makers and academics. … Continue reading