Looking for something?
Contact family support and medical information
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
Pages
Follow me on Twitter
My Tweets
Tag Archives: taking part
NIRDP Planning Day: 14 June 2012
About our Planning Day: WHY PLAN? The aim is to identify what we want to achieve, and to build our Action Plan for the next 3 years. To do this, we need the ideas, skills, knowledge and experience of as … 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
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!