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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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Twitter Updates
Author Archives: Fiona
living with chronic pain?
Do you suffer from Long-Term(Chronic) Pain? The Patient and Client Council is an independent voice for people in Health and Social Care. They want to find out about people’s experience of the treatment and care they have received … Continue reading
Palliative and End of Life Care
Date for you Diary To mark ‘Dying Matters Awareness Week’ You are invited to The regional Palliative and End of Life Care ‘Good Practice and Progress’ event. The event will update on key areas of work that have been undertaken … Continue reading
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
Changing attitudes and behaviour towards people with a disability
CONFERENCE: DELIVERING SOCIAL CHANGE CHANGING ATTITUDES AND BEHAVIOUR TOWARDS PEOPLE WITH A DISABILITY DATE: THURSDAY 2ND MAY 2013, TIME: 9.30AM – 4.15PM VENUE: RIDDEL HALL, QUEENS UNIVERSITY, STRANMILLIS, BELFAST To register for the conference please click on the … 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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Happy Birthday to us!
NIRDP is formally one year old today, 13 February. We were incorporated as a company limited by guarantee on 13 Feb 2012, and are recognised as a charitable company from that date. Go, us! Many, many thanks to all of … Continue reading
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
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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