NIRDP @NI_RDP
Northern Ireland Rare Disease Partnership. Advocating, educating, connecting & innovating for those living or working with #rarediseaseni #in17 nirdp.org.uk Northern Ireland Joined January 2013-
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SWAN UK (Syndromes Without A Name)📷 Help us reach more families this Undiagnosed Children's Day by sharing this post! #share #rareaware #1in17
SWAN UK (Syndromes Without A Name)📷 Help us reach more families this Undiagnosed Children's Day by sharing this post! #share #rareaware #1in17
Contact NI - If you care for or support a child with a rare condition, this is a great opportunity to find out information, share experiences, meet other families and professionals, and hear from specialists in the field. Register here: eventbrite.co.uk/.../supporting…...
Queen’s University creates £12 million research centre to improve efficiency of rare disease trials to unlock more tests and treatments irishnews.com/news/northern-…
Our latest April Newsletter is now available!! mailchi.mp/0d25c3388a34/n…
📢Calling all #RareDisease Researchers📢 ⏰A reminder that we are hosting our first ECR forum on May 10th @QUBelfast. We have lots of exciting opportunities to share your research, including a very exciting 3-minute challenge 🗣️ Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
@NI_RDP will be connecting with the Rare Disease Community. We would like to know which areas in Northern Ireland we should visit. If you are keen to learn more and participate, kindly express your interest by emailing: [email protected] #pleaseshare #rareaware #1in17
Complete this survey (from Queen's University Belfast for NI Department of Health's Northern Ireland Rare Diseases Implementation Group) for people living with rare diseases to find out more about your experiences of participating in research in NI tinyurl.com/RareDiseaseNIR…
Happy Easter for Team NIRDP, we will be closed on Friday, March 30th, and Monday, April 1st. 🐣🐰
Thank you to all who attended yesterday shining a light on the challenges faced by those living with rare diseases! Understanding, support, advocacy for rare patients & their families. Through collective efforts, awareness, & determination, we can achieve meaningful improvements.
Pleased to attend the Mayors reception for @NI_RDP in the Guildhall 🩷 Remarkable work and well done to all involved 👏🏽👏🏽in helping to raise awareness, educate and advocate for support and treatment for those living with a rare condition and their families. #raredisease
Join us tomorrow - Wednesday 27th from 12 - 1.30pm Please register to attend by email: [email protected] #pleaseshare #RareDisease #rareaware
Access Our Virtual Support Hub @NI_RDP supporting those Living with Rare Conditions and their families, friends, and health professionals. We can provide guidance, information, and support, no matter the query. Get in touch, send us an email at [email protected]
What a day!! Another wonderful day promoting helplines and networking! Thank you all who attended, spoke and generally made it a thought provoking event! See you all again in 2025 @hlp @consumerlinda @NSPCCNI @PatientClient @RobbieButlerMLA
We're researching unpaid carers' experiences of rehab and physiotherapy services in NI. If you/the person you care for has used these services or tried to access them in the past, please join our online focus group and share your views. Register via: [email protected]
Check out our latest Newsletter!! mailchi.mp/8f138f6b26da/n… #pleaseshare #rareware #1in17
Our Partnership Development Officer Rosaline Callaghan, attending The BioIndustry Association bringing together policymakers & key stakeholders in the rare disease space to discuss, challenges & future opportunities in securing UK leadership in supporting access to new medicines.
Save the date! Rare Disease Professionals, Practitioners, Mental Health Workers & Support Staff "Understanding Rare," FREE 1.5 remote learning (CPD) session designed to improve - skills & knowledge in supporting the Rare Disease Community. #pleaseshare
Mayors reception March Wednesday 27th from 12noon to attend please register via email: [email protected] #rareaware #1in17
Watch now - debate on Rare Diseases at the Oireachtas oireachtas.ie/en/oireachtas-…
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Prof AJ McKnight @a_j_mcknight
968 Followers 694 Following Interested in genetics, bioinformatics, kidney & rare diseases, MD, Shelties, books, & randomly weird facts...Prof of Molecular Epidemiology & Public Health
Christine McClements @Chris_McClem
3K Followers 3K Following Mum of 3 girls, carer to daughter STXBP1, senior civil engineer & advocate for the full equality, inclusion & dignity of disabled persons. Changing Places
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Fiona McLaughlin @speccymcspec
3K Followers 2K Following Enthusiastic, motivated, exhausted. Feminist. Irish. Grumble about health & politics. She/ her. #disability #BrainFog #RareDisease #ME. Books, beaches, wine.
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Shane McKee @shanemuk
5K Followers 2K Following Genetics/Genomics/Digital doc. Own opinions, curious, &c.
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| Fulbright Scholar || Children's Nurse I PhD I #UCD #Fulbright #RareDiseases #RAINDROP #COVISION #SAMPI Views are my own
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Department of Health @healthdpt
50K Followers 929 Following News and information from the Health and Social Care Sector. Account maintained by the Department of Health in Northern Ireland.
Belfast Telegraph @BelTel
249K Followers 15K Following Northern Ireland news, sport, features, opinion and debate. We #tellitlikeitis. 🏆 Media Outlet of the Year and Best Use of Social Media at @CIPR_NI #NIMA24.
Marie-Louise Connolly @mlchealth
37K Followers 3K Following BBC NI Health Correspondent covering all aspects of health & social affairs. Lots to talk about including The Menopause. contact:[email protected]
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Ulster University @UlsterUni
54K Followers 4K Following Latest news, research and events from Ulster Uni. A leading University with world-class teaching. Student or prospective student? Follow @StudyAtUlster #WeAreUU
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
Colm Gildernew @GildernewColm
6K Followers 6K Following Sinn Féin MLA for Fermanagh & South Tyrone. Sinn Féin spokesperson for Communities. Chair Assembly Committee for Communities.
Health Research Chari.. @HRCIreland
4K Followers 2K Following National umbrella org supporting 45+ charities active in health, medical & social care research. Also run the Irish Health Research Forum. Charity No. 20052973
MaeMurrayFoundation @maemurrayfdn
1K Followers 2K Following 'Let's create true participation for all; in leisure and social settings, regardless of age or ability'
Nuala McAllister MLA @NualaMcAllister
8K Followers 1K Following Alliance Party MLA, North Belfast, former Lord Mayor of Belfast 2017-2018. Working towards a society that is open, welcoming and inclusive.
Hoping for a Baby Pan.. @forababypanda
249 Followers 2K Following Navigating the stupidity that is a fertility journey, in NI, in ‘20/21/22/23 into 24 as I try something new for a while, disillusioned by cookie cutter approach
Linzi @linzi_mcintosh
345 Followers 4K Following Mother of multiple disabilities including Hypermobility, fibromyalgia, to mention a few. All daughter health struggles. EDS. Autism. Gillian Barre' syndrome
The Owl For A Very Mo.. @mcke63g
1K Followers 2K Following Eventually we’ll clean indoor air. retweets don’t imply agreement, maybe aghastness
Lynette Toulouse @lynet_toulo
71 Followers 5K Following
Peer Med Zebra | Rare.. @peermedzebra
74 Followers 295 Following An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!
Scott James Kyle @ScottJKyle1
594K Followers 107K Following Outlander, Trust Me 2, Kajaki, The Angels Share, Trainspotting 2 (Stage), Singin I’m No a Billy He’s A Tim (The Stage Best Actor Winner) https://t.co/0Q5OkVzHB6
Faye Bilbo @bilbo_fa
11 Followers 3K Following
Anne Micks @annedmicks
250 Followers 900 Following Chair Irish EDS 🇮🇪 Rare Disease Advocate| Board Member -Rare Diseases Ireland & Rare Ireland |Former Mgt Consultant. Views are my own.
Pyper Shirk @pyper_sh
83 Followers 5K Following
Meadhbha Monaghan @MeadhbhaM
156 Followers 332 Following Passionate about intersection of #harmreduction #homelessness #displacement #healthequity #representation. Views my own.
Keatheau @keatheau56988
3 Followers 983 Following
ChildhoodTumourTrust @ChildhoodTT
2K Followers 511 Following We are a UK based charity supporting children, young people & their families with the genetic condition Neurofibromatosis Type 1. NDA17 Winner #CTT
Luna @LunaLoom112412
6 Followers 777 Following
Sean Martin @SeanGlenann
57 Followers 469 Following All views my own. Retweets not an endorsement. For work @nipsocomms
Sisters' Hope Foundat.. @SistersHopeALSP
369 Followers 1K Following The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP.
Courtney McAdoo @mcadoo_courtney
23 Followers 81 Following
British Porphyria Ass.. @BPA_Porphyria
374 Followers 120 Following The BPA is a national charity for people with porphyria - a group of rare inherited disorders. The charity was established in 1999.
Landa Prifti @LandaPrifti
100 Followers 186 Following Specialized Surgical Research Consultant, excited by every little discovery in the lab, like a successful surgery & very cool data helping move research ahead!
Eva Bain @EvaBain7
1K Followers 1K Following
kinva @KinvaHealth
349 Followers 805 Following Kinva is an AI-driven, global community platform transforming the delivery of lifecare. The world's first digital multidisciplinary clinic builder.
Jonny McCullough @jonnymcc6
27 Followers 139 Following
Laura Cassidy @L_Cassidy16
203 Followers 144 Following Researcher| Project Manager | Cancer Screening | Maternal nutrition | Gestational Diabetes | Gestational weight gain | Public Health Agency
Helena424 @Helena424496412
2 Followers 52 Following
Adrian Dockery👨�.. @docdockgoose
278 Followers 455 Following Clinical Laboratory Geneticist and proud owner of a very rascally dog.
daytot @daytotjourneys
106 Followers 284 Following Daytot is an innovative early intervention brand, developing life-enhancing products aimed at improving the developmental outcomes for babies #earlyintervention
Thimmel @thimmel52085
60 Followers 2K Following
Twitacct001 Twitacct0.. @twitacct0065939
59 Followers 296 Following
C Fordyce @c_fordyce
118 Followers 149 Following Senior Manager Involvement and Community Development, Belfast HSCT. All views are my own.
Agnès De Leersnyder @A_deleersnyder
369 Followers 840 Following CEO @Future4care Rejoignez-nous pour développer des solutions de #esanté concrètes et bâtir ensemble la santé digitale de demain. #Future4Care #startup #ehealth
Mark Evans @19markevans63
2K Followers 4K Following heart transplant recipient Oct 15 2011. life is precious enjoy every day, treat everyone equally in life, Miami Dolphins fan since 1984
stacey8892 @stacey88921
280 Followers 575 Following Mama- Cancer survivor - Currently teaching pre reg nurses @ QUB and loving it! Nurse for life! Interested in bleeding disorders, stroke care and education
Julie Wilson @JulieWils
534 Followers 5K Following Mother to 3 grown ups (2 guys + 1 gal) Curiously minded, Support Work for a better World, always MY VIEWS 🇮🇱 🇬🇧 🇮🇪 I go vegan now and again, as you do… 😃
Pam Slater @pamslater26
286 Followers 590 Following Raising awareness of FOXP2 & CAS (Childhood Apraxia of Speech), a rare neurological speech disorder. #14daysofdvd @GivingVoice Award. Medics4RD Pt Ambassador
Olivia Davidson Milla.. @livveyjd13
271 Followers 3K Following youth worker°undergrad @UlsterUniCYW ∆ passionate about mental health, reproductive justice, the LGBTQ+ community & faith ∆ comic books & crusaders fc🐇she/her
Hyperinsulinism UK @CHCharityUK
680 Followers 1K Following Support Group, Fun Days, Conferences, Resources, Advocacy, Raise Awareness, Support Research. Supporting Hyperinsulinism families across UK & Ireland
Northern Ireland Kidn.. @NIKRFcharity
352 Followers 645 Following We are the leading kidney research charity in Northern Ireland. Kidney Disease is on the increase. This vital research gives us hope.
Ataxia Centre - UCL I.. @AtaxiaCentreUCL
1K Followers 733 Following Our centre brings together specialists researchers and clinical academics for basic & translational research in all forms of ataxia, and best clinical practice.
Catherine Murnin - Th.. @CatherineMurnin
2K Followers 4K Following Founder The Wellbeing Pathway | 🔴TEDx Curator | Facilitator | Coach | Author & Podcaster Wisdom of Wellbeing | Keynote Speaker | Leadership & Wellbeing
HongRoy @HongRoy114276
155 Followers 2K Following
Emma Lockhart @EmmaLoc975
48 Followers 131 Following
Angela @putnamangela8
141 Followers 3K Following
Gloria Velasquez @GloriaVela85927
100 Followers 3K Following
Stephanie Bell @StephanieBell7
225 Followers 313 Following Freelance journalist with the Belfast Telegraph and Sunday Life, single mum to a cute and sharp 10 year old boy
Mitochondrial Disease.. @mitoandmatt
11 Followers 43 Following The Mitochondrial Disease Experience by Matt Pinder
Renae Stefanetti @RenaeStefanetti
134 Followers 324 Following Research Associate @mitoresearch (clinical trials); Hon Clinical Physiologist @NewcastleHosps (NHS Highly Specialised Service for Mitochondrial Disorders)
Sibs @Sibs_uk
10K Followers 3K Following UK charity for brothers and sisters of disabled children and adults.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Prof AJ McKnight @a_j_mcknight
968 Followers 694 Following Interested in genetics, bioinformatics, kidney & rare diseases, MD, Shelties, books, & randomly weird facts...Prof of Molecular Epidemiology & Public Health
Christine McClements @Chris_McClem
3K Followers 3K Following Mum of 3 girls, carer to daughter STXBP1, senior civil engineer & advocate for the full equality, inclusion & dignity of disabled persons. Changing Places
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Fiona McLaughlin @speccymcspec
3K Followers 2K Following Enthusiastic, motivated, exhausted. Feminist. Irish. Grumble about health & politics. She/ her. #disability #BrainFog #RareDisease #ME. Books, beaches, wine.
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Belfast City Council @belfastcc
120K Followers 587 Following Official account of NI's largest council, with our latest news, events & jobs. Tel: 028 9032 0202 #BeSoundBelfast - read house rules at https://t.co/pAMO4uTC7w
Shane McKee @shanemuk
5K Followers 2K Following Genetics/Genomics/Digital doc. Own opinions, curious, &c.
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| Fulbright Scholar || Children's Nurse I PhD I #UCD #Fulbright #RareDiseases #RAINDROP #COVISION #SAMPI Views are my own
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Department of Health @healthdpt
50K Followers 929 Following News and information from the Health and Social Care Sector. Account maintained by the Department of Health in Northern Ireland.
Belfast Telegraph @BelTel
249K Followers 15K Following Northern Ireland news, sport, features, opinion and debate. We #tellitlikeitis. 🏆 Media Outlet of the Year and Best Use of Social Media at @CIPR_NI #NIMA24.
Public Health Agency @publichealthni
35K Followers 757 Following We are the regional organisation in Northern Ireland for health improvement and health protection. Account not monitored 24/7. https://t.co/EE1G2jsvl1
Marie-Louise Connolly @mlchealth
37K Followers 3K Following BBC NI Health Correspondent covering all aspects of health & social affairs. Lots to talk about including The Menopause. contact:[email protected]
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Ulster University @UlsterUni
54K Followers 4K Following Latest news, research and events from Ulster Uni. A leading University with world-class teaching. Student or prospective student? Follow @StudyAtUlster #WeAreUU
Michelle O’Neill @moneillsf
149K Followers 992 Following First Minister. Sinn Féin Leas Uachtarán (Vice President). Representing the people of the Mid Ulster Constituency since 2007
BBC News NI @BBCNewsNI
358K Followers 2K Following Latest and breaking news from the @BBCNewsNI newsroom. For complaints: https://t.co/SQ0T3Vfd6E
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Joanne Vance @JoanneVanceCDHN
646 Followers 845 Following Director of Community Development and Health Network, passionate about ending health inequalities.
News (PMP) Pseudomyxo.. @NewsJellybelly
311 Followers 389 Following LIVE with Pseudomyxoma Peritonei
ABC Council @abcb_council
8K Followers 463 Following Welcome to Armagh City, Banbridge & Craigavon Borough Council's official Twitter page with all the latest news, events & jobs. Facebook https://t.co/DCSWBbij2H
Strule Arts Centre @StruleArts
1K Followers 871 Following Situated in the heart of Omagh, County Tyrone, Strule Arts Centre is a state-of-the-art multi-purpose venue for Theatre, Music, Dance and the Visual Arts.
Enniskillen Castle: F.. @ECMFCM
11K Followers 12K Following Enniskillen Castle was built almost 600 years ago by Gaelic Maguires. This site houses two museums, #Fermanagh County Museum & The Inniskillings Museum.
Fermanagh & Omagh Dis.. @fermanaghomagh
7K Followers 125 Following Official account of Fermanagh & Omagh District Council. Monitored Mon-Fri 9am-5pm, except holidays #FODC -our house rules https://t.co/z5SH1yNrud
Derry Strabane Cncl @dcsdcouncil
11K Followers 775 Following Derry City & Strabane District Council. We don’t respond to queries/complaints on social - to make contact with us 📞02871253253 or 📧 [email protected]
Derry City Council @derrycc
3K Followers 8 Following This account will close down shortly. Please follow @dcsdcouncil for updates on new Council.
Pears Foundation @PearsFoundation
2K Followers 0 Following We are a British Family Foundation rooted in Jewish values. This is a static account, follow our Director @AmyBraier or Deputy Director @BridgetKohner for more.
Hyperinsulinism UK @CHCharityUK
680 Followers 1K Following Support Group, Fun Days, Conferences, Resources, Advocacy, Raise Awareness, Support Research. Supporting Hyperinsulinism families across UK & Ireland
Share4Rare @Share4Rare
2K Followers 997 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Northern Ireland Kidn.. @NIKRFcharity
352 Followers 645 Following We are the leading kidney research charity in Northern Ireland. Kidney Disease is on the increase. This vital research gives us hope.
Belfast Mens Health G.. @bfastmenshealth
1K Followers 1K Following Belfast Men’s Health Group comprise of voluntary, community & statutory practitioners across the City who work 4 Health 🥗Wellbeing 🧘♂️Community 👥 #TAKE5🖐
Ataxia Centre - UCL I.. @AtaxiaCentreUCL
1K Followers 733 Following Our centre brings together specialists researchers and clinical academics for basic & translational research in all forms of ataxia, and best clinical practice.
Catherine Murnin - Th.. @CatherineMurnin
2K Followers 4K Following Founder The Wellbeing Pathway | 🔴TEDx Curator | Facilitator | Coach | Author & Podcaster Wisdom of Wellbeing | Keynote Speaker | Leadership & Wellbeing
Ulster University Sta.. @UlsterSDN
328 Followers 450 Following We promote inclusion, equality & diversity. We seek to disseminate a range of information which may be of interest to the network. Retweets not an endorsement.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Parent Action @ParentActionNI
3K Followers 3K Following We are taking action - Seeking to promote the human rights of children,young people and adults with disabilities by empowering their parents as advocates!
raising_rareness (Lyn.. @raisingrareness
962 Followers 2K Following Mum of 3 Raising awareness of rare diseases & conditions #2q24.2 Advocating for my daughter & Rare Community 💗 #AAC MA Archaeology UCC Opinions my own
Cerebra @CerebraCharity
10K Followers 1K Following We're the charity dedicated to helping families with children with brain conditions discover a better life together.
Sibs @Sibs_uk
10K Followers 3K Following UK charity for brothers and sisters of disabled children and adults.
Whizz Kidz @WhizzKidz
31K Followers 10K Following We're the UK's leading charity for young wheelchair users
MCDS-Therapy @MCDS_Therapy
741 Followers 2K Following An @EU_H2020 funded clinical trial for the treatment of #RareDisease MCDS. Any related tweets reflect only the views of the project owner.
HSE Research & Develo.. @HSEResearch
4K Followers 3K Following Implementing the @HSElive Action Plan for Health Research 2019-2029 #ResearchEthics #ResearchGovernance #PPI for #EvidenceInformed Health & Social Care in 🇮🇪
Rare Disease Clinical.. @rare_trial
736 Followers 1K Following HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core
Justin McNulty @JustinMcNu1ty
8K Followers 6K Following SDLP MLA for Newry & Armagh | Engineer | Gold Celtic Cross Owner | Family | Friends | 🏐GAA 🟧⬜️ | 🏋🏻♂️Working Out | Níor chaill fear an mhisnigh riamh.
_ERNRITA @_ERNRITA
1K Followers 898 Following ERN for Rare Immunodeficiency, autoinflammatory, autoimmune and paediatric rheumatology Diseases - For all patients with rare immune disorders in Europe
Krabbe UK @KrabbeUk
190 Followers 318 Following Krabbe UK are a UK charity who support babies, children and adults who suffer from Krabbe Disease. Charity Nos. Eng & Wales 1174472 Scotland SC047927
NI Children's Health .. @NIChildHealth
180 Followers 205 Following The NICHC is a group of leading charities and organisations working to improve the quality of health services & holistic support for children and young people.
Peninsula Healthy Liv.. @PeninsulaHLP
89 Followers 90 Following We work in partnership with others, to promote and provide services that improve health and wellbeing and help people of all ages to make positive life choices.
CavernomaIreland @CavernomaIre
241 Followers 1K Following ☘Cavernoma Ireland is a support group to help people in Ireland who are affected by #cavernoma, including their families, friends and carers. #CCM
Fragile X Society, UK @fragilexuk
3K Followers 1K Following Fragile X Syndrome is the most common inherited cause of learning disability. We support & empower individuals, families & professionals.
Robbie Butler MLA @RobbieButlerMLA
13K Followers 4K Following Follower of Jesus Christ, Husband to Belinda, Dad to Robyn and Adam, UUP Assembly Deputy Leader & proud of my wee country...sometimes 😉
Danny Donnelly MLA @DannyDonnelly1
9K Followers 5K Following Shared future believer. @allianceparty MLA for East Antrim. All opinions my own.
Karen Hall @karenhall2020
1K Followers 3K Following Live in Belfast. Head of NI for @mentalhealth. Passions include #triathlon #food #ourweecountry (not necessarily in that order).
EBIAC @EBIACBelfast
813 Followers 777 Following Based at 55 Templemore Avenue, Belfast. We provide Free, Independent and Confidential advice on Social Security, Housing, Employment, Debt etc..
Developing Healthy Co.. @DHCinfo
1K Followers 1K Following This page is not updated regularly. Please follow the linktree below to our other platforms for regular updates ⬇️⬇️
SPRING Social Prescri.. @SPRINGSocialPre
2K Followers 2K Following SPRING Social Prescribing is a collaborative partnership led by @BBHealthForum, @ScotCommHW & @HLCAlliance
SMA Ireland @SMAIrelandCom
455 Followers 828 Following Advocacy group representing those affected by Spinal Muscular Atrophy. Implementing SMA in the heel prick test and improved SMA treatments are top priorities.
Advice Space @AdviceSpace_
2K Followers 4K Following We have been fighting injustice and giving people a voice for the past 56 years. Look no further than @AdviceSpace_ to help solve your problem.
Natasha Barr @caretently
112 Followers 287 Following Creating content with CARE for the rare disease community. Medical writing, translation and content creation services. Formerly worked at @vascern + @orphanet
Simon Hoare MP @Simon4NDorset
24K Followers 3K Following MP for North Dorset I Minister for Local Government I Promoted by Simon Hoare of The Stables, Whitecliff Gardens, Blandford Forum, Dorset, DT11 7BU.
Johny Turnbull @JohnyTurnbull
111 Followers 459 Following An individual interested in health and social care
Action Trauma @actiontrauma
5K Followers 4K Following We are a not-for-profit organisation dedicated to promoting the awareness of trauma recovery throughout the world.
The CGD Association o.. @CGDAofAmerica
183 Followers 585 Following The CGDAA is committed to advocating on behalf of patients and X-linked carriers by providing news and information about Chronic Granulomatous Disease.
Matthew Taylor @MatthewTaylorNI
10K Followers 9K Following Award-winning mental health campaigner, @TEDx speaker, suicide survivor. Neurodiverse & LGBT activist 🏳️🌈. DM’s open for media/speaking enquiries. Views own.
Care & Respond @CareAndRespond
116 Followers 583 Following Create a health passport and engage friends & family support when most needed. Developed in partnership with the NHS.
nicola whitehill @cosmicfairy444
653 Followers 1K Following BSc Hons, Barrister in Law non practising. MRSB. ResearchChampion NIHR https://t.co/Pnm79cyMeI #SclerodermaFreeWorld
Mito Research @MitoResearch
6K Followers 1K Following The latest news from the Wellcome Centre for Mitochondrial Research at Newcastle University. https://t.co/uadf04HQrn…
Prometheus Health @h_prometheus
180 Followers 529 Following Not patients, but experts with stories to share. We work with rare diseases & those with no treatment, to raise awareness & enable patients to fill in the gaps!Our CEO @LouiseFish1 will be in Parliament today at a reception for the #IAmNumber 17 campaign, which drives progress towards elevating care for people living with #RareConditions. Learn more about the campaign 👉 iamnumber17.org.uk #ElevateCareForRare
Join us at 12.30pm today for our online event for people living in HSE region Dublin and South East to support our call for urgent action to address the inadequate newborn heel prick test screening services provided in Ireland. Register at: ow.ly/YqkE50Rhj2e #GetRareAware
The “Get Rare Aware” campaign is urging the government to expand newborn screening. NBS is vital for the early detection and treatment of many rare diseases. The launch starts with a webinar for Dublin/midlands areas Register on this link bit.ly/GRA-Dublin-Mid… @RareDiseasesIE
Taking place Friday. 'Understanding Rare' is an initiative by @NI_RDP designed to foster a deeper understanding and empathy towards the unique needs of the 110,000 individuals living with rare conditions in #NorthernIreland Contact [email protected] to register
Save the date! Rare Disease Professionals, Practitioners, Mental Health Workers & Support Staff "Understanding Rare," FREE 1.5 remote learning (CPD) session designed to improve - skills & knowledge in supporting the Rare Disease Community. #pleaseshare
📢Calling all #RareDisease Researchers📢 ⏰A reminder that we are hosting our first ECR forum on May 10th @QUBelfast. We have lots of exciting opportunities to share your research, including a very exciting 3-minute challenge 🗣️ Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
It's National Siblings Day! Join @Sibs_uk in celebrating today. Why is #NationalSiblingsDay important? - Siblings who grow up with a disabled brother or sister often spend a lot of time coming second to the needs of another. Find out more about at sibs.org.uk/nsd
We are thrilled to announce our first Gala Ball. Tickets on sale soon #SaveTheDate
Misogyny towards disabled women and ableism disabled people face. #Disabled #Disability #DisabledLife #Podcaster #Dating #ableism #tw
Are you an Early Career Rare Disease Researcher? Join us on the 10th of May at Queens University Belfast to share your research and expertise and network with peers 📚📊👩🔬👨🔬👨👩👧👧🗣
Complete this survey (from Queen's University Belfast for NI Department of Health's Northern Ireland Rare Diseases Implementation Group) for people living with rare diseases to find out more about your experiences of participating in research in NI tinyurl.com/RareDiseaseNIR…
Pleased to attend the Mayors reception for @NI_RDP in the Guildhall 🩷 Remarkable work and well done to all involved 👏🏽👏🏽in helping to raise awareness, educate and advocate for support and treatment for those living with a rare condition and their families. #raredisease
🐰🐣Coming Soon! #SayHItoSpring is back! Join in our competition, show us your Spring Art & Crafts or Baking & we will enter you into our prize draw! 2 x winners £25 e-voucher - enter as many times as you wish. Starts 28.03 #Hyperinsulinism #HIFamilies4HIFamilies
Connecting with others who understand the challenges of caring for a baby or child with Hyperinsulinism can make all the difference. We support families, helping them to connect with others forming a strong network & lifelong friendships #Hyperinsulinism #HIFamilies4HIFamilies
What a day!! Another wonderful day promoting helplines and networking! Thank you all who attended, spoke and generally made it a thought provoking event! See you all again in 2025 @hlp @consumerlinda @NSPCCNI @PatientClient @RobbieButlerMLA
@NI_RDP @TNLComFundNI @CeoNIRDP Fantastic news 👏🏻👏🏻👏🏻👏🏻
@NI_RDP @TNLComFundNI @CeoNIRDP Well done team NIRDP. Jxx
We're researching unpaid carers' experiences of rehab and physiotherapy services in NI. If you/the person you care for has used these services or tried to access them in the past, please join our online focus group and share your views. Register via: [email protected]
Thank you for all the tweets today and everyone who contributed to #CRDP24. A long and emotional day for deaf and disabled people. We had our say, and we will get them to listen. I am very tired now, but I will respond when I am back home in good old Greencastle. #Disability
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