🔗To see the full poster visit: www.iamcharlene.com
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#PatientLedResearch #RareDisease #RareDiseaseResearch #PosterPresentation #ResearchCommunity #RareCancer #IAmCharlene #RareGems #BionicWarrior #PPI #PPIE #PatientInvolvement
#SarcomaAwarenessMonth #RareGems #HopeOverFear #StrongerThanSarcoma #RareButResilient #SarcomaSurvivor #BionicWarrior #IAmCharlene
It's been two years and I'm still honoured to receive this award...🏆
#TBT
#ThrowBackThursday
#InspirationalMother
#BionicWarrior
#IAmCharlene
"Even the rarest conditions deserve the loudest voices and the deepest commitment to progress." ~Unknown
#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#Collaboration
#PatientInvolvement
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
#RareDiseaseConference
#PatientAdvocacy
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#IAmCharlene
⭐️Best PPI Poster⭐️
Congratulations to Eva Woods and her team for winning best PPI poster...❤️
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#PatientAdvocacy
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#BionicWarrior
#IAmCharlene
Ms Sarah Forde from the Rare Disease Clinical Trial Network discussing her Clinical Trial Identification Project Overview
❤️
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#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
The last Panel Discussion Chaired by:
Dr Linda O’Neill and Professor Bruce Trapnell
#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
Study Within a Trial (SWAT) was delivered by Professor Valerie Smith.
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#PatientAdvocacy
#RareDisease
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#RareCancers
#BionicWarrior
#IAmCharlene
Dr Leanne Hays spoke about Platform Trials.
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#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
Dr Declan O’Rourke led the Clinical Trial Spotlight on Duchenne Muscular Dystrophy – DYNE-DELIVER (A Paediatric Muscular Disorder). This trial study is the first of its kind in Ireland.
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#RareDiseaseConference
#RareDisease
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#BionicWarrior
#IAmCharlene
And then the emotions began...😢
Thank you Sarah...❤️
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#IAmCharlene
Ms Emer Cooke delivering her Regulatory Perspective on building patient relationships within the medicine regulatory process.
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#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
The amazing Cassy from the Rare Disease Clinical Trial Network thanking all the Patient Collaborators for their hardwork towards the Conference.
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#PatientInvolvement
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
The amazing Cassy from the Rare Disease Clinical Trial Network thanking all the Patient Collaborators for their hardwork towards the Conference.
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#PatientInvolvement
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
Clinical Trial Spotlight: Autoimmune Pulmonary Alveolar Proteinosis-IMPALA 2 (Lung Diseases) was led by Professor Elisabeth Bendstrup
#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
Great panel discussion chaired by Dr Fiona Browne and Dr Kyrylo Lebed.
A rare disease patient rightly pointed out the challenges of data registry being captured from different hospitals.
#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
#RareResearch25
#RareDiseaseConference
#RareDisease
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#RareCancers
#BionicWarrior
#IAmCharlene
Professor Sinéad Murphy speaking on the Rare Neurological Disease Registry and the key milestones.
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#BionicWarrior
#IAmCharlene
Dr Sinéad Hickey and Ms Lara Cutlar discussing a rare skin condition called Epidermolysis Bullosa (EB) and expanding the Registry.
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#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
Professor Natasha Appelman-Dijkstra presented the European Registries for Rare Endocrine and Bone Conditions.
Looking forward to connecting with her today to discuss all things related to Bone!👥
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#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
Daniel Mikula kicked us off with his Rare Disease Research Catalyst Data Overview.
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#BionicWarrior
#IAmCharlene
🔗You can find out more here: rarediseaseresearch.ie/conference-2...
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#BionicWarrior
#IAmCharlene
Can't wait to exchange insights and connect with fellow attendees...👥
#InclusivePPI
#RareDiseaseResearch
#PanelDiscussion
#EDI
#BionicWarrior
#IAmCharlene
With years of physical recovery and mental healing I now focus on the impact I make within health research and will forever support my bone cancer community.
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#WorldCancerDay
#WCD25
#WearARibbon
#UntilTheresACure
#BoneCancer
#BionicWarrior
