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RAiN
@RAiNAllIreland
All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
ID:1622575247516999682
https://www.rainrareresearch.org 06-02-2023 12:38:08
556 تغريدات
510 متابعون
490 التالية
![Daniel Nuzum(@danielnuzum) 's Twitter Profile Photo Daniel Nuzum(@danielnuzum) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1529892860442685443/TW7W6Bs9_200x200.jpg)
![RAiN(@RAiNAllIreland) 's Twitter Profile Photo RAiN(@RAiNAllIreland) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1622578279176630274/Wq9_9YBc_200x200.jpg)
Rare Disease Care Pathway Patient Journey Infographic designed by the National Rare Disease Office #NRDO HSE Ireland #Ireland more information Ward, A.J. et. 2022 doi.org/10.1186/s13023… Rare Diseases Ireland RARE Ireland Rare Disease Clinical Trial Network, Ireland Dr Suja Somanadhan Prof AJ McKnight Melissa Kinch
![RAiN (@RAiNAllIreland) on Twitter photo 2024-04-28 12:03:35 Rare Disease Care Pathway Patient Journey Infographic designed by the National Rare Disease Office #NRDO @HSELive #Ireland more information Ward, A.J. et. 2022 doi.org/10.1186/s13023… @RareDiseasesIE @rareireland @rare_trial @sujas15 @a_j_mcknight @Melissa_Kinch_ Rare Disease Care Pathway Patient Journey Infographic designed by the National Rare Disease Office #NRDO @HSELive #Ireland more information Ward, A.J. et. 2022 doi.org/10.1186/s13023… @RareDiseasesIE @rareireland @rare_trial @sujas15 @a_j_mcknight @Melissa_Kinch_](https://pbs.twimg.com/media/GMQB60rWEAAS8tT.jpg)
![Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1756828489368354817/5W_jtrA8_200x200.jpg)
Great news for researchers! Abstract submission extended until 02nd of May 🎙️ come and join us Queen's University Belfast 🎓 Prof AJ McKnight Are you studying #Genetics #Biomolecular #Diagnostic #Careneeds #Services CPCCONF2024 #RareDiseases RAiN Rare Disease Clinical Trial Network, Ireland Rare Diseases Ireland RARE Ireland
![Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1756828489368354817/5W_jtrA8_200x200.jpg)
Come and join this free online webinar focused on co-ordination of care with a focus on #RareDiseases great line of speakers EURORDIS-Rare Diseases Europe Genetic Alliance UK 22Q11 Ireland Great learning opportunity CPCCONF2024 Rare Disease Clinical Trial Network, Ireland Rare Diseases Ireland RARE Ireland Don’t forget to register 😉
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It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫
Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
![RAiN (@RAiNAllIreland) on Twitter photo 2024-04-25 18:25:00 It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫 Submit an abstract👇 docs.google.com/forms/d/1qbFmJ… It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫 Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…](https://pbs.twimg.com/media/GMB8rxqW8AE9zhE.jpg)
![Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1756828489368354817/5W_jtrA8_200x200.jpg)
'I WISH' Lucy's vision for a painting portraying life with #harlequins #ichthyosis is a stunning blend of science and art. This #PPI masterpiece sheds light on the challenges of #RareDisease . Proud to see it take 1st prize at a UK exhibition! #ScienceMeetsArt CPCCONF2024 🎨👏
![Dr Suja Somanadhan (@sujas15) on Twitter photo 2024-04-25 21:50:42 'I WISH' Lucy's vision for a painting portraying life with #harlequins #ichthyosis is a stunning blend of science and art. This #PPI masterpiece sheds light on the challenges of #RareDisease. Proud to see it take 1st prize at a UK exhibition! #ScienceMeetsArt @cpcconf2024 🎨👏 'I WISH' Lucy's vision for a painting portraying life with #harlequins #ichthyosis is a stunning blend of science and art. This #PPI masterpiece sheds light on the challenges of #RareDisease. Proud to see it take 1st prize at a UK exhibition! #ScienceMeetsArt @cpcconf2024 🎨👏](https://pbs.twimg.com/media/GMCqYgrXsAAKx97.jpg)
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It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫
Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
![RAiN (@RAiNAllIreland) on Twitter photo 2024-04-25 18:25:00 It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫 Submit an abstract👇 docs.google.com/forms/d/1qbFmJ… It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫 Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…](https://pbs.twimg.com/media/GMB8rxqW8AE9zhE.jpg)
![Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo Dr Suja Somanadhan(@sujas15) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1756828489368354817/5W_jtrA8_200x200.jpg)
Delighted to present a number of outputs from #SAMPI project funded by Children's Health Ireland CHI at Temple Street children experience of living with #RareDisease CPCCONF2024
please stopping by ✋ poster 56 & 65 #Music #Sandplay #Art Alison Sweeney RAiN UCD School of Nursing, Midwifery & Health Systems UCD Research
![Dr Suja Somanadhan (@sujas15) on Twitter photo 2024-04-25 09:33:36 Delighted to present a number of outputs from #SAMPI project funded by @CHI_Ireland @TempleStreetHos children experience of living with #RareDisease @cpcconf2024 please stopping by ✋ poster 56 & 65 #Music #Sandplay #Art @AlisonSweeneyMT @RAiNAllIreland @ucdsnmhs @UCD_Research Delighted to present a number of outputs from #SAMPI project funded by @CHI_Ireland @TempleStreetHos children experience of living with #RareDisease @cpcconf2024 please stopping by ✋ poster 56 & 65 #Music #Sandplay #Art @AlisonSweeneyMT @RAiNAllIreland @ucdsnmhs @UCD_Research](https://pbs.twimg.com/media/GMADWV9WcAA3s0c.jpg)
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📢 Ciliopathy patients and carers 📢
There is a patient centered ciliopathy meeting in Dublin Sept 9-10. Registration is free and open now! There are a few travel grants available but you need to register by May 15th. cilia2024.ie/patients-day/
#cilia #ciliopathy #JoubertSyndrome
![NDCil (@ND_Cil) on Twitter photo 2024-04-25 12:00:50 📢 Ciliopathy patients and carers 📢 There is a patient centered ciliopathy meeting in Dublin Sept 9-10. Registration is free and open now! There are a few travel grants available but you need to register by May 15th. cilia2024.ie/patients-day/ #cilia #ciliopathy #JoubertSyndrome 📢 Ciliopathy patients and carers 📢 There is a patient centered ciliopathy meeting in Dublin Sept 9-10. Registration is free and open now! There are a few travel grants available but you need to register by May 15th. cilia2024.ie/patients-day/ #cilia #ciliopathy #JoubertSyndrome](https://pbs.twimg.com/media/GMAk_ouWwAAc3-f.png)
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Tomorrow marks #UndiagnosedChildrensDay 💫 We at RAiN stand in support of children, young people & families undergoing the 'diagnostic odyssey' and support the amazing work that SWAN Ireland and SWAN UK (syndromes without a name) do to support children and families with 'a syndrome without a name' 🧬
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Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to Cambridge Rare Disease Network (CamRARE) in Nov. #raredisease #LATSS2024 ISG UK LifeArc
![Edel O'Toole (@EdelOToole) on Twitter photo 2024-04-24 08:11:51 Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to @camraredisease in Nov. #raredisease #LATSS2024 @ISG_Charity @lifearc1 Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to @camraredisease in Nov. #raredisease #LATSS2024 @ISG_Charity @lifearc1](https://pbs.twimg.com/media/GL6m2yRWgAAR68d.jpg)
![Melissa Kinch(@Melissa_Kinch_) 's Twitter Profile Photo Melissa Kinch(@Melissa_Kinch_) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1775929166505873408/zNmeiH03_200x200.jpg)
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Excited to announce the next speakers for our upcoming #CareCoordination webinar, Dr. Rita Francisco and Dr. Jessie Dubief from EURORDIS-Rare Diseases Europe, who will be speaking about the Rare Barometer Programme and H-Care project for Rare Diseases.
Register here: ucd-ie.zoom.us/webinar/regist…… ✨🧬
![RAiN (@RAiNAllIreland) on Twitter photo 2024-04-24 13:50:06 Excited to announce the next speakers for our upcoming #CareCoordination webinar, Dr. Rita Francisco and Dr. Jessie Dubief from @eurordis, who will be speaking about the Rare Barometer Programme and H-Care project for Rare Diseases. Register here: ucd-ie.zoom.us/webinar/regist…… ✨🧬 Excited to announce the next speakers for our upcoming #CareCoordination webinar, Dr. Rita Francisco and Dr. Jessie Dubief from @eurordis, who will be speaking about the Rare Barometer Programme and H-Care project for Rare Diseases. Register here: ucd-ie.zoom.us/webinar/regist…… ✨🧬](https://pbs.twimg.com/media/GL70TY_XEAAvnRi.jpg)
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Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫
Senior research fellow Dr. Holly Walton UCL and Research Director, Dr. Amy Hunter Genetic Alliance UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study).
![RAiN (@RAiNAllIreland) on Twitter photo 2024-04-23 09:33:11 Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫 Senior research fellow Dr. @HollyWalton15 @ucl and Research Director, Dr. Amy Hunter @GeneticAll_UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study). Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫 Senior research fellow Dr. @HollyWalton15 @ucl and Research Director, Dr. Amy Hunter @GeneticAll_UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study).](https://pbs.twimg.com/media/GL1s7X0XIAAb9zz.jpg)
![RAiN(@RAiNAllIreland) 's Twitter Profile Photo RAiN(@RAiNAllIreland) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1622578279176630274/Wq9_9YBc_200x200.jpg)
Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫
Senior research fellow Dr. Holly Walton UCL and Research Director, Dr. Amy Hunter Genetic Alliance UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study).
![RAiN (@RAiNAllIreland) on Twitter photo 2024-04-23 09:33:11 Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫 Senior research fellow Dr. @HollyWalton15 @ucl and Research Director, Dr. Amy Hunter @GeneticAll_UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study). Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫 Senior research fellow Dr. @HollyWalton15 @ucl and Research Director, Dr. Amy Hunter @GeneticAll_UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study).](https://pbs.twimg.com/media/GL1s7X0XIAAb9zz.jpg)
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All systems go, as we prepare for the very first ECR forum Queen's University Belfast 🎓 on the 10th of May! Have you submitted your #RareDisease research yet? 💫
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Very welcome and loved being part of this (online) as a rare disease advocate and hearing the passion and committment from students in designing solutions.
Well done to all 5 groups! Another piece of amazing collaborative work by Dr Suja Somanadhan #RareDiseaseChampion
![EURORDIS-Rare Diseases Europe(@eurordis) 's Twitter Profile Photo EURORDIS-Rare Diseases Europe(@eurordis) 's Twitter Profile Photo](https://pbs.twimg.com/profile_images/1650772121595830273/tuBIvwXj_200x200.png)
We sat down with EURORDIS President, Avril Daly 💚, and our new Chief Executive, Virginie Bros-Facer, to catch up on how the leadership transition has been for them.
Virginie shares her immediate priorities and her message for our member organisations!
📖 go.eurordis.org/V8xnCc