A Vision for Change
We work to create and accelerate positive change by working in partnership with families, patients, carers, researchers, health care professionals, the local health departments and member charities.
Donate, Thank you for considering a donation to the Northern Ireland Rare Disease Partnership
Action
We work to to enable people who live or work with rare or hard to diagnose conditions to connect, advocate, educate and innovate in partnership with each other.
Support
We work together to ensure that no one in Northern Ireland is disadvantaged because of the rarity of their condition.
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by ni_rdp 2 years ago
@ni_rdp wish to congratulate the NI Rare Disease All Party Group Officers, on their election success. We look forward to working with you to raise the voice to the #raredisease @talldurkanhandsome @maoliosamchugh @paula_bradshaw_alliance @Deborah Erskine MLA #1in17 #rareaware -
by ni_rdp 2 years ago
Information, support, guidance and signposting. @ni_rdp support any individuals, family member, carer, friend or even health care professionals living or working with a rare condition in NI. Contact via email on: info @nirdp .org.uk or our social media pages. #rareni #rareaware #1in17 -
by ni_rdp 2 years ago
We are delighted to share that the second ever meeting of the Rare Disease Forum, and the first event to focus on this topic of research, will take place on Wednesday the 8th June at 6.30pm. On behalf of the Steering Group, this event is being led by Health Research -
by ni_rdp 2 years ago
@ni_rdp staff day! Wonderful to meet in person @innovatebelfast #rareaware #1in17 #rareni -
by ni_rdp 2 years ago
Our support hub ladies- Edel & Caroline will be getting out and about across the country to say hello. This week we will be in Larne "Main Street" on Wednesday June 1st from 11am. No matter the question or query we are here. @meaapni #rareaware #communityoutreach #rareni -
by ni_rdp 1 year ago
Congratulations Rosaline and the Amyloidosis organising team . A phenomenal event in the heart of Donegal . We leave with great hope for further treatments for Amyloidosis and other rare diseases. Thank you for the honour of being part of this historic and insightful day. #rareaware #1in17 #amyloidosis -
by ni_rdp 1 year ago
Make caring visible, valued and supported’ #careerweeks #rareaware #1in17 #raredisease https://www.carersweek.org/?cmp=campaign -
by ni_rdp 1 year ago
@rarerevolutionmagazine , Awareness of the challenges and burdens face with Gentle reminders for our rare disease community. Copy and paste the link to rare the spotlight edition on long term care giving. https://bit.ly/RareDiseaseCaregiving #CarersWeek #CarersWeek2022 #rareaware #1in17 -
by ni_rdp 1 year ago
Thursday June 16th is Rare Chromosome Disorder Awareness Day. @unique_charity It’s a day to celebrate, educate, shine bright together and reach out to those who need help or might not have heard of chromosome and gene disorders. Here’s a few things you can do for #Rarechromoday #rareaware #rareni Copy & -
by ni_rdp 1 year ago
All-Party Group on Rare Disease, To help give voice to the 1 in 17 affected by rare disease. Looking forward to elect officers & reconstitute this important APG for new electoral mandate today Wed 22 June 1230 Mark H Durkan @talldurkanhandsome Maolíosa McHugh MLA Paula Bradshaw MLA, Alliance Party Deborah -
by ni_rdp 1 year ago
A brilliant day for #RareDiseaseNI community. All-Party Group for Rare Disease - thanks to APG officers who have been re-elected once again. Thanks to all MLA members of the APG, looking forward to working with you all. #rareaware #rareni #1in17 Mark H Durkan @talldurkanhandsome Maolíosa McHugh MLA Paula Bradshaw MLA, -
by ni_rdp 1 year ago
The Virtual Support Hub will be getting out and about across the country to say hello! This week will be in De Courcy Centre Carrickfergus on Wednesday June 29th at 11am. #Communityoutreach #rareaware #meaap #1in17 -
by ni_rdp 1 year ago
Today our Community Navigator Caroline is in the Decourcy Shopping Centre in Carrickfergus, come along and say HELLO! Thank you to @meaapni for having us. @deafblindukcharity #rareaware #rareni -
by ni_rdp 1 year ago
We will be closed from Monday 11th July, reopening Wednesday 20th July. If you require information or support contact info @nirdp .org.uk The NIRDP Team will be in touch on return to the office. #rareaware #rareni #1in17 -
by ni_rdp 1 year ago
Research Study! Are you an adult wheelchair user with childhood onset disability? Do you want to exercise in a local gym? The Ulster University are seeking participant's, sessions will be based in Carryduff. To find our more or to sign up contact Dr Karen McConnell at neurophysio @ulster .ac.uk or 028 7167 -
by ni_rdp 1 year ago
Fancy a family day out at Benone beach? ️ Wheelchair users can come & try beach mobility equipment including floating water wheelchairs and learn how to access the free loan scheme available all summer! Wet suits and accessible changing are available. A limited number of Sit Surf board sessions are -
by ni_rdp 1 year ago
Maggie’s Call: Carnlough family shine a light on rare diseases and boost charity, a huge thank you from all the rare disease community, for considering others at such a difficult time. #rareaware #thankyou #rareni Copy and paste for the full story, https://www.northernirelandworld.com/news/people/maggies-call-carnlough-family-shine-a-light-on-rare-diseases-and-boost-charity-3777839 -
by ni_rdp 1 year ago
With the cost of living increases, many people will be worrying on how best to manage their finances, @adviceni_1 offer a freephone advice line: 0800 915 4604 #rareni #1in17 #pleaseshare -
by ni_rdp 1 year ago
@family_fund 'Your Opportunity' has limited funding and we will accept applications from families on a first-come, first-served basis until the funding is fully allocated. Copy & paste the link here: https://www.familyfund.org.uk/help-for-18-24-year-olds?fbclid=IwAR2fZQIb5q-oWHYhojHQ4IkR2lST4DE1cJMct_73SPNiONRMeb9-pTsWs6E -
by ni_rdp 1 year ago
Our Virtual Support Hub team will be getting out and about across the country to say HELLO! Do you have an upcoming community event you would like us to attend? Please email: info @nirdp .org.uk #rareaware #rareni #1in17