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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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Category Archives: Uncategorized
Working meetings
NIRDP hold working meetings every two months or so. These are open to all, and have an agenda based on our four strategic themes advocating educating innovating stronger together Volunteers are working away on work under each of these themes … Continue reading
Trip ability
Michael Holden, a Northern Ireland Rare Disease Partnership member, has been working on a website which will allow people to review places and attractions, in terms of their accessibility for people with a disability. Michaels website is called “Trip-Ability” and … Continue reading
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Rare Disorders Without Borders- highlights of the day
Soon, there will be a conference report and video of the event available. In the meantime, check out the video on experience of living with a rare disease in Ireland, and read the NI … Continue reading
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Rare Disdorders Without Borders live webcast
@RDWB13 / #RDWB13 The webcast starts at 9am on Thursday 28th February 2013. Click the PLAY button to start the webcast. Please note that this webcast will also work on most devices – eg iphone / ipad / smartphone / … Continue reading
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That’s Rare! – the NIRDP newsletter
The December NIRDP newsletter: Thats Rare!
Response to Transforming Your Care consultation
For the NIRDP’s response to the Transforming Your Care consultations please click below: NIRDP response to Transforming Your Care consultation Jan 2013
Rare Disorders without Borders
Rare Disorders without Borders Save the date An all-Ireland meeting of patients’ organisations to mark International Rare Disease Day and the Irish Presidency of the Council of the European Union 28th February, 2013 at 9am Wood Quay Venue Civic Offices, … Continue reading
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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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On Diagnosis
“When newly diagnosed the impact on the person/ family is like a bomb going off- everyone is stunned, the air is cloudy and you can’t see the way forward. You feel stuck in time, stranded, isolated, victimised, life as you … Continue reading