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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: stronger together
Rare Disease Day
The 2013 theme for Rare Disease Day is Rare Disorders Without Borders- particularly relevant to a small island on the far west of Europe with its own international border. NI Rare Disease Partnership are co hosting a joint event with … Continue reading
Stronger Together
Over a thousand people, holding hands across the River Foyle. Radio, local press, YouTube video. Families, volunteers, the mayor and a jazz band. A fun day with activities. There was even sunshine. What was it all about? To raise awareness … Continue reading
What do you want the UK rare disease plan to include?
Those of us who live or work with rare disease in NI have an important opportunity just now. It’s the chance to make our voices heard- to get politicians and policy makers to hear what’s important to us, what will … Continue reading