Have always said that nowhere is #IntegratedCare more needed than in the area of individually rare collectively common #RareDiseases (numbering in their thousands)
#1in17 affected usually with #ComplexCareCoMorbidity
Aine Carroll IFIC Updates #icic2024

Individually rare collectively common #RareDiseases are often full of #ComplexCare needs & multimorbid conditions. Get coordination of care right for RD's at the start of life, if this was the norm rather than the exception all else thereafter would be easier - for us all.

As Much is someone who lives with #harlequins #ichthyosis , her wish that her hands wouldn't sting when she eats crisps is a vivid reminder in this stunning award-winning painting of how important it is to ask 'What matters to you?' CPCCONF2024
#harlequins #ichthyosis

Wonderful initiative for all the children attending who use Lámh Signing on a daily basis 👏🏻👏🏻👏🏻👏🏻👏🏻

Such a privilege to present at this excellent conference - the island of Ireland really is leading the way with collaborative working in #ppc . No surprise with such great colleagues leading the way Mary Felton Fiona McElligott Joanne Balfe John Allen Hannah Linane et al….

Reaching the end of an academic programme can be exhausting, but fulfilling and liberating too!Students on the GradDip Childrens Crit Care and Children's Cardiac inspire with their irrepressible motivation and good humour UCD School of Nursing, Midwifery & Health Systems Children's Health Ireland Margo Lloyd Katie Morris caroline k

We are lucky to hear from Dr Daniel Nuzum who is taking us through his presentation ‘Perinatal Palliative Care: spirituality, care and memory #cpcc2024

Best wishes to our brilliant colleague Daniel Nuzum who is first up after lunch CPCCONF2024

Session co-chairs: Mary Felton & Paula whelan (@IrishHospice)

#CPCC2024 #PerinatalPalliativeCare

Marymount Hospice Cork University Hospitals Ireland South Women & Infants Directorate Irish Association for Palliative Care Clinical & Pastoral Supervision and Education

The Parents voice is always the most powerful presentation at CPCCONF2024
Viasta was just amazing sharing her sons life and death with us.

So proud of saoltagroup HSE Community Healthcare West children's nurses presenting their work CPCCONF2024 demonstrating their ongoing commitment to providing quality care to our most vulnerable children carolinemcgarry @TinaKenny Claire Lynott Karen Leonard ChiefNurse NCNN

Over 6,000 people from 50 countries responded to our latest Rare Barometer survey conducted with the Screen4Care project.

Join our webinar to find out what they said and how you can make sure that their voices are heard:
📅 30 April 2024
⏰ 2pm CEST
👉 go.eurordis.org/XAVrIz

Prof Orla Franklin, Consultant in Paediatric Cardiology presents ‘Antenatal Cardiology’ at #cpcc2024

Lorna Fraser CPCCONF2024 talks about reconizing clinical decline and movement between phases in Wales. #Cpcc2024

Joint poster from myself, Jean Lehane and @laffanalice24 - 'Dividing labour to multiply success' at this year's #cpcc2024 #childrenspalliativecare
CHI at Temple Street

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 😉

Excellent start to day 2 #CPCC2024 Paediatric Palliative Care updates from Northern Ireland & Ireland Fiona McElligott Lots of great work happening, network development, education, clinical standards, pathways and research

Our family have had the pleasure of meeting Lucy, the sweetest girl living life to the full. Lucy and her Mom Dr Carleen Walsh are some of the most inspiring people I have had the pleasure of meeting on my #RareDisease journey. Such a powerful art piece 👏 #harlequins #ichthyosis

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

Evidence from data #UK highlights Children with life limiting conditions are disproportionately high users of healthcare Lorna Fraser CPCCONF2024 #PPC Rare Disease Clinical Trial Network, Ireland Rare Diseases Ireland RAiN LauraLynn, Ireland's Children's Hospice Sally Ann Lynch

First speaker of the day Dr. David Graham #CCPC2024