Here are some of the amazing creations by attendees as part of a spiritual practice in my presentation today at #CPCC2024

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

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

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 😉

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…

'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 🎨👏

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…

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

📢 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

As a very wise RAiN CRAG member said 'Be the voice, not the Echo!' 📢💫

Dr Suja Somanadhan Children with Rare diseases

“They want to be the voice, not the echo”

RAiN @cpcc2024 #cpcc2024

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' 🧬

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

An amazing example of #PPI from a fabulous young lady living with severe ichthyosis, Lucy's wish 💫 An amazing example of how we can involve young people with lived experience to share their challenges and support communities to become #RareAware 🧬💫

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…… ✨🧬

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).

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).

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? 💫

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

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