nirdp.org.uk nirdp.org.uk

nirdp.org.uk

Northern Ireland Rare Disease Partnership

Advocating, educating, and innovating for those living or working with rare diseases in NI

http://nirdp.org.uk/

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Northern Ireland Rare Disease Partnership | nirdp.org.uk Reviews
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Advocating, educating, and innovating for those living or working with rare diseases in NI
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1 skip to content
2 our vision
3 the back story
4 events
5 thanks
6 larr;
7 older posts
8 posted on
9 danielle
10 share
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skip to content,our vision,the back story,events,thanks,larr;,older posts,posted on,danielle,share,posted in,uncategorized,leave a comment,rare disease day,fiona,tagged,strongertogether,celebrate,gillian cassidy,22qawarenessdays,christine,programme,pages
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Northern Ireland Rare Disease Partnership | nirdp.org.uk Reviews

https://nirdp.org.uk

Advocating, educating, and innovating for those living or working with rare diseases in NI

INTERNAL PAGES

nirdp.org.uk nirdp.org.uk
1

RDD2014 Videos | Northern Ireland Rare Disease Partnership

http://www.nirdp.org.uk/rdd2014-videos

Advocating, educating, and innovating for those living or working with rare diseases in NI. Living Every Day with Rare Disease. Click to email this to a friend (Opens in new window). Click to share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Click to share on Google (Opens in new window). Leave a Reply Cancel reply. Northern Ireland Rare Disease Partnership. A Company Limited by Guarantee, Registered in Northern Ireland: NI611153. HMRC Charity Reference: XT38294.

2

stronger together | Northern Ireland Rare Disease Partnership

http://www.nirdp.org.uk/tag/stronger-together

Advocating, educating, and innovating for those living or working with rare diseases in NI. Living Every Day with Rare Disease. Tag Archives: stronger together. Good News on access to drugs for rare conditions: Thank you, Minister! July 20, 2016. Click to email this to a friend (Opens in new window). Click to share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Click to share on Google (Opens in new window). Rare Disease Implementation Plan. June 1, 2015. May 10, 2015.

3

care | Northern Ireland Rare Disease Partnership

http://www.nirdp.org.uk/tag/care

Advocating, educating, and innovating for those living or working with rare diseases in NI. Living Every Day with Rare Disease. Living Life with Rare Disease: Taking the scare out of Palliative Care. June 1, 2015. It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”. Palliative care … Continue reading →. Click to email this to a friend (Opens in new window).

4

Christine | Northern Ireland Rare Disease Partnership

http://www.nirdp.org.uk/author/christine

Advocating, educating, and innovating for those living or working with rare diseases in NI. Living Every Day with Rare Disease. Making our voices heard. August 4, 2016. We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system. So we are working to make sure … Continue reading →. Click to email this to a friend (Opens in new window). Click to share on Facebook (Opens in new window).

5

awareness | Northern Ireland Rare Disease Partnership

http://www.nirdp.org.uk/tag/awareness

Advocating, educating, and innovating for those living or working with rare diseases in NI. Living Every Day with Rare Disease. Living Life with Rare Disease: Taking the scare out of Palliative Care. June 1, 2015. It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”. Palliative care … Continue reading →. Click to email this to a friend (Opens in new window).

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pseudomyxomasurvivor.org pseudomyxomasurvivor.org

Links | Pseudomyxoma Survivor

http://www.pseudomyxomasurvivor.org/links

Other resources you may find useful. Http:/ www.cancer52.org.uk/. Cancer52 represents 80 predominantly small cancer charities united by their vision of seeing a better future for everyone affected by the rare and less common cancers, which account for more than half of all cancer deaths in the UK. Community Cancer Centre (CCC). Http:/ www.communitycancercentre.org.uk/. Supporting cancer patients, their carers, families and anyone who is affected by cancer. Http:/ www.eurordis.org/. The NET Patient Founda...

raredisease.org.uk raredisease.org.uk

Rare Disease Day 2015

http://www.raredisease.org.uk/rare_disease_day_2015.htm

What is a rare disease? Rare Disease Day 2015. Rare Disease Day 2015. In 2015, Rare Disease Day was themed around ‘living with a rare disease day-by-day, hand-in-hand’, and emphasises the challenges in the daily lives of patients, families and caregivers who are living with a rare disease. It was also an opportunity to highlight the importance of implementing the. UK Strategy for Rare Diseases. Liz Kendall MP, Shadow Minister for Care and Older People, hosted the event. Ms Kendall confirmed that Labo...

memineandotherbits.wordpress.com memineandotherbits.wordpress.com

healthcare support – me, mine, and other bits

https://memineandotherbits.wordpress.com/healthcare-support

Me, mine, and other bits. PSP- a long story. What February is all about. This page develops as I learn. What I’m interested in, and why. Up to date medical information, and family support, from Contact a Family. Huntington’s Disease Youth Organisation. Wilson’s Disease Association. Syringomyelia Arnold Chiari Association. Public Health Agency awareness raising. Rare disease information and lobbying. 8211; the portal for rare diseases and orphan drugs. Northern Ireland Rare Disease Partnership. Maybe I fi...

pseudomyxomaperitonei.org pseudomyxomaperitonei.org

Links | Pseudomyxoma Survivor

http://www.pseudomyxomaperitonei.org/links

Other resources you may find useful. Http:/ www.cancer52.org.uk/. Cancer52 represents 80 predominantly small cancer charities united by their vision of seeing a better future for everyone affected by the rare and less common cancers, which account for more than half of all cancer deaths in the UK. Community Cancer Centre (CCC). Http:/ www.communitycancercentre.org.uk/. Supporting cancer patients, their carers, families and anyone who is affected by cancer. Http:/ www.eurordis.org/. The NET Patient Founda...

pseudomyxomasurvivor.com pseudomyxomasurvivor.com

Links | Pseudomyxoma Survivor

http://www.pseudomyxomasurvivor.com/links

Other resources you may find useful. Http:/ www.cancer52.org.uk/. Cancer52 represents 80 predominantly small cancer charities united by their vision of seeing a better future for everyone affected by the rare and less common cancers, which account for more than half of all cancer deaths in the UK. Community Cancer Centre (CCC). Http:/ www.communitycancercentre.org.uk/. Supporting cancer patients, their carers, families and anyone who is affected by cancer. Http:/ www.eurordis.org/. The NET Patient Founda...

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