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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: supporting the carer
PSP support
Progressive Supranuclear Palsy is a rare neurological condition, usually affecting people over 40. It affects movement, balance, vision, speech and swallowing. There is no cure for the condition and treatment takes the form of symptom management, with significant input from community based Allied … Continue reading
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Tagged Progressive Supranuclear Palsy, support groups, supporting the carer
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Study day
NIRDP hosted a study day for health professionals and care providers in Strabane, Co Tyrone, on 6th March. Participants came from all over the Western Health and Social Care Trust area, and from Donegal. The event was chaired by Dr … Continue reading
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Tagged compassion fatigue, education, HD, MND, PSP, study day, supporting the carer, who do I tell?, WHSCT
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