The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 24th February!
This year it will all be online, in the evening and free so there is nothing stopping you from joining us. We will be focusing on DIAGNOSIS. Why is a diagnosis so important and why is it imperative that diagnosis comes as early as possible?
We will be hearing from patients, parents, advocates and clinicians. We are particularly excited to hear about how early diagnosis can allow for gene therapy to change the lives of children born with debilitating rare diseases.
AGENDA on 24th February 2021 via Zoom: 6:00pm Welcome and introduction
Dr Lucy McKay, Chief Executive Officer, Medics for Rare Diseases
6:05pm Rare Disease 101
Dr Lucy McKay
6:15pm The undiagnosed diseases program
Dr Gareth Baynam, Clinical Geneticist, Genetic Services of Western Australia
6:30pm Shortening the diagnostic odyssey through newborn screening
Georgina Morton, Founder and Chair, ArchAngel MLD Trust
6:45pm Harnessing the power of gene therapy after diagnosis
Prof Bobby Gaspar, Honorary Clinical Professor, Great Ormond Street Hospital and the UCL Institute of Child Health and CEO, Orchard Therapeutics
7:00pm Panel discussion
7:15pm I am Number 17 Campaign
David Rose, Rare Disease Patient and Advocate from Rare Revolution Magazine
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The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 24th February!
This year it will all be online, in the evening and free so there is nothing stopping you from joining us. We will be focusing on DIAGNOSIS. Why is a diagnosis so important and why is it imperative that diagnosis comes as early as possible?
We will be hearing from patients, parents, advocates and clinicians. We are particularly excited to hear about how early diagnosis can allow for gene therapy to change the lives of children born with debilitating rare diseases.
BOOK NOW!
AGENDA on 24th February 2021 via Zoom:
6:00pm Welcome and introduction
Dr Lucy McKay, Chief Executive Officer, Medics for Rare Diseases
6:05pm Rare Disease 101
Dr Lucy McKay
6:15pm The undiagnosed diseases program
Dr Gareth Baynam, Clinical Geneticist, Genetic Services of Western Australia
6:30pm Shortening the diagnostic odyssey through newborn screening
Georgina Morton, Founder and Chair, ArchAngel MLD Trust
6:45pm Harnessing the power of gene therapy after diagnosis
Prof Bobby Gaspar, Honorary Clinical Professor, Great Ormond Street Hospital and the UCL Institute of Child Health and CEO, Orchard Therapeutics
7:00pm Panel discussion
7:15pm I am Number 17 Campaign
David Rose, Rare Disease Patient and Advocate from Rare Revolution Magazine
7:30pm Winner of Student Voice Prize 2020
7:40pm Panel discussion
8:00pm Close of meeting
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