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.
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.
by ni_rdp2 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_rdp2 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_rdp2 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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_rdp1 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
by ni_rdp 2 years ago