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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: consultation
Workshop invitation – End of Life Care Patient Passport
The Royal College of GPs NI End of Life Care Group would like to invite you to a workshop in the process of designing the End of Life Care Patient Passport. They have been commissioned to complete this task by the … Continue reading
Posted in Events
Tagged consultation, end of life care, patient passport, primary care, RCGP, workshop
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UK Rare Disease Plan consultation and webinar
At the NIRDP launch on 29th February, Rare Disease Day, Edwin Poots, the NI Minister for Health, Social Services and Public Safety, launched a public consultation on a UK plan for rare diseases. (See the consultation document here). This is a joint … Continue reading
Posted in Events
Tagged consultation, event, UK Plan for Rare Disease Consultation, webinar
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