Les martin @LesMartin_Ire
Dad to 2 sick boys, rare disease and newborn screening advocate Wicklow, Ireland Joined March 2017-
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Today, we approved the first FDA-approved gene therapy indicated for the treatment of children with pre-symptomatic late infantile, pre-symptomatic early juvenile or early symptomatic early juvenile metachromatic leukodystrophy (MLD). fda.gov/news-events/pr…
In 2021, 38,000 newborn babies were diagnosed with a rare disease as a result of #neonatalscreening. On 28 June, we will highlight the importance of #neonatalscreening for those living with a rare disease. Find out more 👇 bit.ly/4bqsHPB #INSD
It was so wonderful to reconnect with everyone at the #RareDisease2024 event #Dublin @rareireland @22Q11_Ireland @avrilbdaly @LesMartin_Ire
It's a leap day today - a rare day for #RareDiseasesDay What will you do to show your support for people living with rare disease in Ireland? Check our website rdi.ie/rdd-2024/ Watch 'Looking to the future....' or take a walk in St Stephen's Green or #LightUpForRare
Inspirational ! @AlanFinglas1 @rareireland @RareDiseasesIE @DonnellyStephen youtu.be/WCRCkkWYuiA
What a hero! Alan Finglas collecting his patient advocate leader award this week at world symposium San Diego California for his tireless work in researching a treatment for his sons rare disease. Dylan and Ireland are proud of you! @RareDiseasesIE @RAiNAllIreland @roinnslainte
Yesterday we launched the iamnumber17.ie exhibition and campaign to highlight the fact that 1 in 17 people in Ireland are affected by a rare disease at some point in their lives
Watch: New rare disease awareness campaign launched via @rtenews rte.ie/news/health/20…
imt.ie/news/funding-a… Funding approved for new conditions to be assessed in heel prick tests this year
Stay tuned for more information about a rare disease campaign we are involved in, launching tomorrow, February 7th. Did you know 1 in 17 Irish people are living with a rare disease? #IAmNumber17 @RareDiseasesIE @22Q11_Ireland @KasiaWhysall @LesMartin_Ire @annedmicks
Screen newborns for devastating condition as ‘world’s most expensive therapy’ can spare them fate of my son, father pleads independent.ie/irish-news/scr…
HSE approves €3m one-off treatment for sufferers of rare and 'devastating' disease irishexaminer.com/news/arid-4131…
Thanks to all involved in this effort @DonnellyStephen @HSELive @roinnslainte This is only part of the solution tho… we need newborn screening for MLD for this treatment to be of any use. A great step forward today 👍😉❤️@RareDiseasesIE @IPPOSI
Thanks to all involved in this effort @DonnellyStephen @HSELive @roinnslainte This is only part of the solution tho… we need newborn screening for MLD for this treatment to be of any use. A great step forward today 👍😉❤️@RareDiseasesIE @IPPOSI
This morning I spoke to Sean Kenny father of Aidan who died recently from MLD and who campaigned for life-saving medicine Libmeldy which we’ve now approved through Beneluxa Initiative. I also met today with Les Martin who lost his son Cathal to this rare disease.
'It's their legacy': Father hails approval of MLD drug via @rtenews rte.ie/news/2024/0124…
We had a busy couple of days this week. Tues we were @RAiNAllIreland international symposium. It was a lovely day of networking and hearing the voices of #PLWRD. Wed we were at @LeinsterHouse supporting #GetRareAware the #RareCommunity is growing, we are #StrongerTogether
We are very excited to announce our conference is going ahead again this year #SaveTheDate, registration opens next week. Stand by to hear our line of of guest speakers!
Tragedy of children lost to rare disease for which there was no cure irishtimes.com/business/2023/… via @IrishTimesBiz
A new Rare Disease Plan for Ireland & let’s hope it’s an ‘Action’ one with a budget behind it for implementation to ensure #meaningfulchange to #PLWRD & their families. ‘In 2023, the government has committed €2.7 million to support the implementation of this Strategy’
A new Rare Disease Plan for Ireland & let’s hope it’s an ‘Action’ one with a budget behind it for implementation to ensure #meaningfulchange to #PLWRD & their families. ‘In 2023, the government has committed €2.7 million to support the implementation of this Strategy’
Marking #RareDiseaseDay today with an announcement that we will develop a new Rare Diseases Plan as committed to in the Programme for Government. gov.ie/en/press-relea… @padraigosull @IrishCancerSoc @IPPOSI
Fergal Bowers @FergalBowers
145K Followers 19K Following Health Correspondent, RTÉ News, Ireland. NUJ member 44 years. Author. Member AEJ. Views here my own, not of RTE. Follow, or retweets, not an endorsement.
Simon Harris TD @SimonHarrisTD
243K Followers 1K Following Taoiseach (Prime Minister of Ireland), Leader of Fine Gael & Wicklow TD.
Tracy 💜 ☮️📸.. @AddressingLife
10K Followers 6K Following Grieving mom of Brendan Bjørn & devoted mom to D; Writer; Disability Advocate. Former Carer, School Counselor & Child/Family Therapist. BA & MA in Counseling.
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
Stephen Donnelly @DonnellyStephen
88K Followers 2K Following Minister for Health. Fianna Fáil TD for Wicklow. Trying to improve the system from the inside. Loving being a dad, after 7am.
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| #FulbrightScholar |Children's Nurse I PhD I #RareDiseases #Child-health #RAIN #RAINDROP #COViSION #SAMPI Views are my own
𝙅𝙤𝙝𝙣 𝙒.. @walls2
15K Followers 9K Following - Cancer Survivor ♋ - Thriving on Life 😊 - Patient Advocate - Healthcare Campaigner - HPV Vaccine Supporter #medicalcardscandal #CarpeDiem ❤️
Bernadette Sheehan Gi.. @sheehangilroy
1K Followers 5K Following Lecturer @MTU_ie Researcher @DCU Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile"
Ann Higgins @annmhiggins
2K Followers 716 Following Bereaved Mother 💛 School Principal @ Hospital School CHI at Temple Street Passionate about Special & Inclusive Educational Environments
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
Jean Evans @NetworkingJean
4K Followers 4K Following Connecting people & businesses to help them succeed & thrive #Networking #Blogger #Mentor https://t.co/6ZvEiXctF4 - Also dealing with a dose of #cancer
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
AccidentalAdvocate @AccidentalAdvo1
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Tiffanie Harrow @HarrTiffani
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Cathleen 😻 @Cathleen5725
5 Followers 485 Following Ехploring nеw dimensions оf рlеasure. Arе yоu uр fоr it?
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Danyel Gillig @danye_gill
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Bronwyn 💋 @Bronwyn4616
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Pádraig O'Sullivan T.. @padraigosull
4K Followers 4K Following @fiannafailparty #CNC RT not endorsement [email protected] 28A Ballyhooley Road,Dillons Cross 0214502289 Ashdale House Blarney Unit 6 0214385369
Margaret Paulk @PaulkMarga69965
42 Followers 5K Following
Wynter Byant @WynteBy
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Quinn Essman @EssmanQuin47135
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Aoife Murphy @AoifeMurphy40
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rubbish-taxi @Valera66982760
16 Followers 108 Following Rubbish removal and clearance Rubbish-taxi.ie
Nikki Donnelly @nikkidonline
478 Followers 717 Following Mum of three, writer, editor and communications specialist. Avid runner, tennis novice and yoga lover. #communications #publicrelations #content 🕊🇺🇦
KasiaGoljanekWhysall @KasiaWhysall
779 Followers 1K Following Researcher in muscle/NMJ/miRs/RNAs; IRC Laureate&Senior Lecturer, NUI Galway & University of Liverpool; https://t.co/J76r8LyFyh
cillianboushel @cillianbou36694
260 Followers 1K Following
Cassandra Dinius @CassandraDinius
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Ciara Micks @CiaraMicks
88 Followers 334 Following I’m 22, I live with Ehlers Danlos Syndrome. My aim is to share info & spread awareness about this not so rare condition
Fred Doherty @Fred17842988
12 Followers 58 Following
Spina Bifida & Hydroc.. @SBH_PAG
1K Followers 5K Following Parent-led voluntary group advocating for children living with Spina bifida and/or Hydrocephalus in Ireland Co-leads @mandacoughlan @UnaKeightley #backus
Ronan McGreevy @RMcGreevy1301
20K Followers 21K Following Irish Times journalist. Author: Great Hatred: The Assassination of Field Marshal Sir Henry Wilson MP, co-author The Kidnapping. WW1 tour guide (@gtigrouptravel)
Priscilla Lynch @PriscillaLynch
9K Followers 5K Following Award winning journalist and editor, specialising in health, medical science & current affairs. Clinical Editor of @med_indonews and freelancer.
Gillian @gillianmstaffo1
481 Followers 5K Following I am a female who has a visual disability and likes to have fun. MSoc Rights&Policy
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
Jo Uí Chrualaoich @uichrualaoich
224 Followers 1K Following Mum, DoH Official,Scientist, Social Scientist, Lecturer, Ultra runner, Ironman and Lifelong Student.
Priorat Aparthotel, F.. @priorathotel
1K Followers 3K Following A Boutique Aparthotel in Falset, the gateway to the Priorat.We’re Irish but more ugly ducklings than wild geese.https://t.co/i2MxPECEWx
Rebecca Fleming (She/.. @rebeccaflem98
269 Followers 1K Following Genetic Counselling Student Cardiff 📚🧬QC analyst 🥼🥽Rare disease patient TSC 🏳️🌈
Edwina Wrenn O'Connel.. @MsEdwina
535 Followers 1K Following Irish Exomphalos / Omphalocele Warrior. I set up and run the only Irish Omphalocele / Exomphalos support group Mom of three 💙💜💙 https://t.co/qDyE3ZJZyA
SJKfoundation @SJK_Foundation
336 Followers 1K Following Promoting awareness, education, and research into Cancer of Unknown Primary (CUP)
Jillser @Jigsawsrock1
233 Followers 1K Following family, music, cellist, singing, jigsaws, science, pharmacy, GAA, MND aware
Agron Hasani @agronh
292 Followers 1K Following Recovering Nutella addict (currently in relapse) and Labradoodle owner! Employed by Novartis but views = mine. 🇺🇦
AXIS Consulting @AXISConsultLTD
794 Followers 2K Following HTA’s , Pricing, Reimbursement and Market Access specialists for the UK and Ireland
Úna Keightley @UnaKeightley
612 Followers 1K Following Co-lead of @SBH_PAG. Health/Disability Advocate. Radiation Therapist ☢️ 🏥 working in 🇮🇪 Trained by NHS Scotland 🏴 All opinions my own.
RAiN @RAiNAllIreland
478 Followers 475 Following All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
Dr Carleen Walsh @CARLEENWALGAL
518 Followers 2K Following Wife & mum|👩👼👼🙎🏼👶|Donegal IRL|Rare Disease Caregiver|Teacher|SEN|Psych @RCSDungloe @UlsterUni @BamfordCentre @RAiNAllIreland @CSENID @atu_ie #raredisease
Ciaran Murphy @ciarmurp1
0 Followers 13 Following
Fb @Fbb2pls
4 Followers 48 Following
Tedie Lalantacon @AGenTLman1
0 Followers 23 Following
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.
Jonathan O'Grady @jonathanogrady
664 Followers 950 Following Business consultant. Hon President @IrishWheelchair. Founder @SMAIrelandCom. Backgammon fiend, #TheArchers addict and horse fan. Views my own.
Andrew @andreadereggi
13 Followers 89 Following
RTÉ News @rtenews
1.4M Followers 306 Following RTÉ News and Current Affairs - Irish and International News
President of Ireland @PresidentIRL
207K Followers 260 Following Tweets from Áras an Uachtaráin, with updates on the work of Uachtarán na hÉireann Michael D. Higgins.
Fergal Bowers @FergalBowers
145K Followers 19K Following Health Correspondent, RTÉ News, Ireland. NUJ member 44 years. Author. Member AEJ. Views here my own, not of RTE. Follow, or retweets, not an endorsement.
Micheál Martin @MichealMartinTD
196K Followers 2K Following Tánaiste, Minister for Foreign Affairs and Minister for Defence. Uachtarán Fhianna Fáil. TD for Cork South Central.
Irish Independent @Independent_ie
873K Followers 161 Following https://t.co/pT0SGCt8uD is Ireland's most read news website providing breaking news content to 13 million readers a month. Get in touch: [email protected].
NewstalkFM @NewstalkFM
313K Followers 2K Following CONVERSATION THAT COUNTS | Listen to Newstalk at https://t.co/YOeK7Xn9Mn
Paul McGrath @Paulmcgrath5
211K Followers 578 Following
Simon Harris TD @SimonHarrisTD
243K Followers 1K Following Taoiseach (Prime Minister of Ireland), Leader of Fine Gael & Wicklow TD.
Tracy 💜 ☮️📸.. @AddressingLife
10K Followers 6K Following Grieving mom of Brendan Bjørn & devoted mom to D; Writer; Disability Advocate. Former Carer, School Counselor & Child/Family Therapist. BA & MA in Counseling.
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
Stephen Donnelly @DonnellyStephen
88K Followers 2K Following Minister for Health. Fianna Fáil TD for Wicklow. Trying to improve the system from the inside. Loving being a dad, after 7am.
The Irish Times @IrishTimes
779K Followers 163 Following Diverse opinion, thorough reporting and outstanding writing from https://t.co/kyuHbbMIzH, plus RTs of our journalists. Customer service team is @IrishTimesHelp.
Dr Suja Somanadhan @sujas15
3K Followers 4K Following Associate Professor I Researcher| #FulbrightScholar |Children's Nurse I PhD I #RareDiseases #Child-health #RAIN #RAINDROP #COViSION #SAMPI Views are my own
𝙅𝙤𝙝𝙣 𝙒.. @walls2
15K Followers 9K Following - Cancer Survivor ♋ - Thriving on Life 😊 - Patient Advocate - Healthcare Campaigner - HPV Vaccine Supporter #medicalcardscandal #CarpeDiem ❤️
Bernadette Sheehan Gi.. @sheehangilroy
1K Followers 5K Following Lecturer @MTU_ie Researcher @DCU Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile"
𝕊𝕥𝕖𝕡𝕙�.. @Stephenteap
10K Followers 983 Following Very Proud Father of 2 amazing little boys. Widower. Patient Advocate.
HSE Ireland @HSELive
271K Followers 494 Following Your official guide to what's happening in the health services. Not monitored 24/7. In an emergency dial 999. Twitter policy https://t.co/XMsKkP1AvQ #ForUsAll
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
Jean Evans @NetworkingJean
4K Followers 4K Following Connecting people & businesses to help them succeed & thrive #Networking #Blogger #Mentor https://t.co/6ZvEiXctF4 - Also dealing with a dose of #cancer
Dr. Ali Raza Ansari @DrAliRaza111
3K Followers 3K Following Paediatrician/GP Trainee| Founder @ Doctors Relocation Ireland |VP @TrainUs4Ireland|Campaigner 4 Health Reforms & to stop BrainDrain from IRL.
John Lahart TD @JohnLahart
5K Followers 3K Following Honoured to represent people of Dublin South West - "We're going to need a bigger boat!". Views my own - (01)4662026 / Fianna Fáil
Pádraig O'Sullivan T.. @padraigosull
4K Followers 4K Following @fiannafailparty #CNC RT not endorsement [email protected] 28A Ballyhooley Road,Dillons Cross 0214502289 Ashdale House Blarney Unit 6 0214385369
U.S. FDA @US_FDA
563K Followers 145 Following Our posts are FDA Approved! Privacy Policy - https://t.co/LbTJXYRXVP FDA Authentic Accounts - https://t.co/w2LNbzG7M0
Nikki Donnelly @nikkidonline
478 Followers 717 Following Mum of three, writer, editor and communications specialist. Avid runner, tennis novice and yoga lover. #communications #publicrelations #content 🕊🇺🇦
Denis Naughten @DenisNaughten
12K Followers 576 Following Chair of @IPUparliament Science & Tech W/Group | Chair of Parliamentary Committee on Social Protection,Community & Rural Dev.& Islands | TD for Roscommon Galway
Bernard Gloster @BernardGloster
7K Followers 621 Following Personal Account CEO HSE (Previously CEO Ireland’s Child & Family Agency TUSLA). For official HSE content go to @HSELive
WORLDSymposia @WORLDSymposia
966 Followers 372 Following We're Organizing Research on Lysosomal Diseases
Ronan McGreevy @RMcGreevy1301
20K Followers 21K Following Irish Times journalist. Author: Great Hatred: The Assassination of Field Marshal Sir Henry Wilson MP, co-author The Kidnapping. WW1 tour guide (@gtigrouptravel)
Joanne Hughes @joannehughes196
187 Followers 523 Following Metabolic Paediatrician in Dublin via Belfast. Mum, dog owner and slow runner. Passionate about fairness and equality.
Wonderful Wicklow @Welcome2Wicklow
1K Followers 587 Following All things Wicklow, curated by people that love Co. Wicklow in Ireland 💚
Irish Times Business @IrishTimesBiz
82K Followers 866 Following The latest business news, analysis and commentary from The @IrishTimes.
IPHA @ipha
6K Followers 1K Following We represent the inventors of medicines to prevent, treat and, sometimes, cure diseases. #InnovateForLife
Aurora Alerts Ireland @auroraalertsIRE
6K Followers 31 Following Aurora alerts ireland provides Northern Lights Updates and Noctilucent Clouds updates and alerts for the island of Ireland.
Newstalk Breakfast @NTBreakfast
94K Followers 4K Following Ciara Kelly & Shane Coleman bring your news, analysis & opinion from 7-9am on @NewstalkFM. Got a story or comment? [email protected] #100daysofwalking
RAiN @RAiNAllIreland
478 Followers 475 Following All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
Wicklow County Counci.. @wicklowcoco
8K Followers 368 Following Wicklow County Council is the administrative body with responsibility for local government in County Wicklow.
Great Lighthouses of .. @gtlighthouses
6K Followers 1K Following 17 Lighthouses around the stunning coastline of the island of Ireland for you to stay in or visit. An EU INTERREG IVA initiative developed by @irishlights
Prof AJ McKnight @a_j_mcknight
971 Followers 695 Following Interested in genetics, bioinformatics, kidney & rare diseases, MD, Shelties, books, & randomly weird facts...Prof of Molecular Epidemiology & Public Health
Coningbeg Buoy @ConingbegBuoy
1K Followers 2 Following The Coningbeg Buoy is a Type 1 South Cardinal Mark located off Wexford. It also monitors local weather & sea state in real time. Email: [email protected]
Splaugh Buoy @SplaughBuoy
1K Followers 2 Following The Splaugh Buoy is a Type 2 Port Laternal Mark located off Rosslare. It also monitors local weather & sea state in real time. Email: [email protected]
Kish Lighthouse @kishlhouse
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Screen4Care @Screen4Care
326 Followers 124 Following Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
Screen4Rare @Screen4Rare
186 Followers 51 Following A multi-stakeholder platform launched by IPOPI, ISNS and ESID aiming to exchange knowledge and best practices on newborn screening for rare diseases.
Morning Ireland @morningireland
191K Followers 5K Following RTÉ's flagship news and current affairs programme, available to listen to, and watch live, on @RTERadio1 @rtenews @rteplayer
Irish Examiner @irishexaminer
282K Followers 648 Following Trusted coverage from https://t.co/5uDpOxTUYY | Share news or stories with us: https://t.co/L9VmRCH6AA…
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Cure MLD @cure_mld
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ACMG @TheACMG
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Alliance for Regenera.. @alliancerm
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Prof. Bobby Gaspar @bobby_gaspar
834 Followers 50 Following Professor @UCL @GreatOrmondSt talking about gene therapy, primary immunodeficiency, SCID, rare diseases. Politics and sports enthusiast. My views are my own.
Kerry FitzGerald @KerryFitzG
456 Followers 928 Following Social media brand consultant. I can help you to build your brand using #social. I can also #train you to do it yourself.
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77K Followers 7K Following 📺 🍴 TV Host & Cook on Food Network USA & UK, HBO Max's Baketopia, ITV's This Morning & RTÉ | New Cookbook: https://t.co/hdjGIRubwm…
Garvan Grant @garvangrant
7K Followers 2K Following ‘All the news that’s fit to be broken.’ Telling it like it is. Kind of. Author @TrueishHistory: https://t.co/ygQrK5rMAh
Anthony Staines @astaines
11K Followers 4K Following Now @[email protected] Irish medical academic, Prof. of Health Systems, working on public health & policy. FG'er * +353866069713 * [email protected]
It was so wonderful to reconnect with everyone at the #RareDisease2024 event #Dublin @rareireland @22Q11_Ireland @avrilbdaly @LesMartin_Ire
Never underestimate the power of your voice! Approval of gene therapy #Libmeldy for children living with #MLD would not have happened without @LesMartin_Ire tireless advocacy #NBS next! RTE news : Drug used to treat MLD to become available in Ireland rte.ie/news/2024/0124…
This is wonderful news for all who live with the #raredisease MLD, in telling their story & never giving up - @LesMartin_Ire & his family have made a remarkable difference for so many @RareDiseasesIE @rareireland @eurordis
Never underestimate the power of your voice! Approval of gene therapy #Libmeldy for children living with #MLD would not have happened without @LesMartin_Ire tireless advocacy #NBS next! RTE news : Drug used to treat MLD to become available in Ireland rte.ie/news/2024/0124…
A new Rare Disease Plan for Ireland & let’s hope it’s an ‘Action’ one with a budget behind it for implementation to ensure #meaningfulchange to #PLWRD & their families. ‘In 2023, the government has committed €2.7 million to support the implementation of this Strategy’
Marking #RareDiseaseDay today with an announcement that we will develop a new Rare Diseases Plan as committed to in the Programme for Government. gov.ie/en/press-relea… @padraigosull @IrishCancerSoc @IPPOSI
Thanks to National Rare Diseases Office @HSELive for joining us in Stormont for our #RareDiseaseDay celebration with @NI_RDP . We are all looking forward to getting a new National Rare Disease Plan in place. @CcoHse @DonnellyStephen @CMOIreland
Today is #RareDiseaseDay. On the last day of February 2020 President Higgins hosted a reception for Families of Children with Rare Conditions and to commend those involved with @RareDiseasesIE president.ie/en/diary/detai…
If those vulnerable to #COVID19 are *only* over 65s, people living with #Cancer #cardiac #pulmonary #diabetes & #RareDiseases - stats suggest thats approx 2m of #Irish population! *only* is family, friends & valued members of our communities - not *only* - *us*
How great is this? The world's tallest building in Dubai lit for #RareDiseaseDay, funded by the Loulou Foundation. Thanks also to my niece Amy Hinksman & friend Aoife Maher for getting involved in an awareness walk in Dubai. More of this is much needed #TreatCureMSD #SavingDylan
"You are in the home of the President of Ireland, and nobody is more welcome." Speech by President Higgins to children and families affected by rare diseases, last Saturday: president.ie/en/diary/detai… #rarediseaseday2020
A salute to a brave dad, Les Martin who faced a room full of women on International Women's Day and shared their family's story and a mission to detect Rare diseases early Network Ireland @Lesmart11659095 gregcantyfuzion.com/2020/03/03/les…
Fair play to President Higgins for hosting Rare Disease Day 2020. Well done to Les Martin & all involved, and for fighting the fight to progress treatment, and access to treatment, for rare diseases. Needs to be a big focus for the next government.
Full house at Áras an Uachtaráin, as President Higgins marks the 13th International Rare Disease Day with patients and their families. See president.ie/en/diary/detai… #rarediseaseday2020
Friends, There is a show called 'This Week' from 1-2pm on RTE Radio1 (today 1st March)Alan is being interviewed with Graham Tierney, the artist that painted Dylan for an art exhibit called @BeyondtheDx Graham, thanks for attending our Ball last night for #WorldRareDiseaseDay
#RareDiseaseDay 2020 at Áras an Uachtaráin. Read more at president.ie/en/diary/detai…
So privileged to meet the truly inspirational Martin family @Lesmart11659095 today advocating for the expansion of #newbornscreening in Ireland. 👏 Individually a minority, together a priority 💪#RareDisease #RareDiseaseDay
This is what its all about - standing together for Cathal & the 300 million. Its important to say thanks to you @Lesmart11659095 Vicky @RareDiseasesIE & @sujas15 for all you do, have done & continue to do for #RareDisease & our community #RareDiseaseDay
All together looking forward together @Lesmart11659095 at @PresidentIRL Aras. #RareDiseaseDay
What a wonderful way for children and families to celebrate #RareDiseaseDay at Áras an Uachtaráin.Thank you @PresidentIRL for hosting this remarkable occasion to mark 13th international rare diseases day #Ireland @eurordis @avrilbdaly @AvrilKennan @Lesmart11659095 @RareDiseasesIE
Thank you @PresidentIRL for standing with us #RareDiseaseDay @RareDiseasesIE @eurordis @RetinaInt
Know that #COVID19 is priority at the moment so seeing @paulreiddublin today at the Aras made a rare day feel really special! #RareDiseaseDayIrl
The @PresidentIRL& his wife Sabina shared their home with the people&families of Ireland affected by a rare disease, RD advocates, among others. @PresidentIRL emphasised he is standing with the Rare Disease Community & hopes every #RareDiseaseDay will be a time to “mark progress”
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