LightNews — News, ranked by scholars

I Am Charlene

@iamcharleneyoung.bsky.social

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.

🧡

#WorldCancerDay
#WCD25
#WearARibbon
#UntilTheresACure
#BoneCancer
#BionicWarrior

February 4, 2025 at 8:04 PM

I Am Charlene

@iamcharleneyoung.bsky.social

Study Within a Trial (SWAT) was delivered by Professor Valerie Smith.

#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 2:15 PM

I Am Charlene

@iamcharleneyoung.bsky.social

"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

April 18, 2025 at 4:35 PM

I Am Charlene

@iamcharleneyoung.bsky.social

Ms Sarah Forde from the Rare Disease Clinical Trial Network discussing her Clinical Trial Identification Project Overview

❤️

#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 3:16 PM

I Am Charlene

@iamcharleneyoung.bsky.social

⭐️Best PPI Poster⭐️

Congratulations to Eva Woods and her team for winning best PPI poster...❤️

#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 5:14 PM

I Am Charlene

@iamcharleneyoung.bsky.social

The amazing Cassy from the Rare Disease Clinical Trial Network thanking all the Patient Collaborators for their hardwork towards the Conference.

#RareResearch25
#PatientInvolvement
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 10:19 AM

I Am Charlene

@iamcharleneyoung.bsky.social

The amazing Cassy from the Rare Disease Clinical Trial Network thanking all the Patient Collaborators for their hardwork towards the Conference.

#RareResearch25
#PatientInvolvement
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 10:16 AM

I Am Charlene

@iamcharleneyoung.bsky.social

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!👥

#RareResearch25
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 8:39 AM

I Am Charlene

@iamcharleneyoung.bsky.social

#PublicInvolvement #PPI #PPIE
#PPIContributors #HealthResearch #ClinicalTrials #Patients #Engagement #EDI #Diversity #Communities #Cancer #RareDiseases #RareGem #BionicWarrior #IAC #IACWorkshops

November 19, 2024 at 10:10 PM

I Am Charlene

@iamcharleneyoung.bsky.social

Dr Leanne Hays spoke about Platform Trials.

#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 1:59 PM

I Am Charlene

@iamcharleneyoung.bsky.social

🔗To see the full poster visit: www.iamcharlene.com

🧡

#PatientLedResearch #RareDisease #RareDiseaseResearch #PosterPresentation #ResearchCommunity #RareCancer #IAmCharlene #RareGems #BionicWarrior #PPI #PPIE #PatientInvolvement

March 9, 2026 at 8:09 PM

I Am Charlene

@iamcharleneyoung.bsky.social

And then the emotions began...😢

Thank you Sarah...❤️

#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 11:59 AM

I Am Charlene

@iamcharleneyoung.bsky.social

Daniel Mikula kicked us off with his Rare Disease Research Catalyst Data Overview.

#RareResearch25
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 8:27 AM

I Am Charlene

@iamcharleneyoung.bsky.social

Professor Sinéad Murphy speaking on the Rare Neurological Disease Registry and the key milestones.

#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 8:58 AM

I Am Charlene

@iamcharleneyoung.bsky.social

The last Panel Discussion Chaired by:
Dr Linda O’Neill and Professor Bruce Trapnell

#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 2:31 PM

I Am Charlene

@iamcharleneyoung.bsky.social

Ms Emer Cooke delivering her Regulatory Perspective on building patient relationships within the medicine regulatory process.

#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 11:15 AM

I Am Charlene

@iamcharleneyoung.bsky.social

Clinical Trial Spotlight: Autoimmune Pulmonary Alveolar Proteinosis-IMPALA 2 (Lung Diseases) was led by Professor Elisabeth Bendstrup

#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 10:16 AM

I Am Charlene

@iamcharleneyoung.bsky.social

Dr Sinéad Hickey and Ms Lara Cutlar discussing a rare skin condition called Epidermolysis Bullosa (EB) and expanding the Registry.

#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene

April 10, 2025 at 8:46 AM

I Am Charlene

@iamcharleneyoung.bsky.social

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

April 10, 2025 at 9:52 AM

I Am Charlene

@iamcharleneyoung.bsky.social

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.

#RareResearch25
#RareDiseaseConference
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene