We're so glad you shared this brilliant work at the #RareResearch25 Conference! A great example of progress and hope for #EBcare and #EBresearch in #RareSkin disease. Thank you for joining us and for everything you contribute to advancing rare disease research!
"Even the rarest conditions deserve the loudest voices and the deepest commitment to progress." ~Unknown
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⭐️The Poster That Caught My Eye!⭐️
Julieta B. Bonvin Sallago's poster highlights the importance of why Clinicians and Researchers should receive 'Cultural Awareness Training'.
"One size DOES NOT fit all"
Well done Julieta ...❤️
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⭐️Best PPI Poster⭐️
Congratulations to Eva Woods and her team for winning best PPI poster...❤️
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Ms Sarah Forde from the Rare Disease Clinical Trial Network discussing her Clinical Trial Identification Project Overview
❤️
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The last Panel Discussion Chaired by:
Dr Linda O’Neill and Professor Bruce Trapnell
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An image of 5 speakers and chairs on the podium with a slide behind them showing the conference title.
The lovely people in the @rarediseasectn.bsky.social have done a fantastic job of bringing a diverse range of perspectives together for the #RareResearch25 conference. Researchers, clinicians, industry reps, regulators and many patients and advocates in the room.
Study Within a Trial (SWAT) was delivered by Professor Valerie Smith.
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Dr Leanne Hays spoke about Platform Trials.
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Session Three: Trials Methodology & Translation
From platform trials to translational medicine, this session dives into innovative research methods that bring therapies to patients faster!
Chaired by Dr Linda O’Neill and Prof Bruce Trapnell at the #RareResearch25 Conference
Session Three started with Professor Marc Humbert explained Translating Basic Science into Meaningful Therapies - New therapeutic approaches in pulmonary arterial hypertension (Rare Lung Condition)
His message was of 'hope'...
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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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And then the emotions began...😢
Thank you Sarah...❤️
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Ms Emer Cooke delivering her Regulatory Perspective on building patient relationships within the medicine regulatory process.
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Session Two: Stakeholder Perspectives on Rare Disease Clinical Trials.
How do regulators, patients & industry collaborate in rare disease research?
Join chairs Prof Elisabeth Bendstrup and Prof Sean Gaine as we hear diverse perspectives shaping clinical trials! #RareResearch25
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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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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Clinical Trial Spotlight: Autoimmune Pulmonary Alveolar Proteinosis-IMPALA 2 (Lung Diseases) was led by Professor Elisabeth Bendstrup
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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.
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Professor Sinéad Murphy speaking on the Rare Neurological Disease Registry and the key milestones.
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Dr Sinéad Hickey and Ms Lara Cutlar discussing a rare skin condition called Epidermolysis Bullosa (EB) and expanding the Registry.
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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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Kicking off the #RareResearch25 Conference here in O'Reilly Hall!
Session One: European Reference Network Registries
Chairs Dr Fiona Browne and Dr Kyrylo Lebed explore the latest advancements in rare disease registries with top experts sharing insights from across Europe.
Daniel Mikula kicked us off with his Rare Disease Research Catalyst Data Overview.
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🔗You can find out more here: rarediseaseresearch.ie/conference-2...
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