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Last year, Dr Sandy Ayoub (now alumnus of St George’s University of London) teamed up with the patient group, FOP and Friends, to talk directly to a patient living with a rare disease. Her insightful and compassionate essay ‘Dual Deprivation for Rare Diseases‘ is a testament to the rapport she built up with the patient and his mother as she explored the intimate relationship between rare disease and mental health. And tomorrow night (Thursday 22nd Oct) at 8pm Sandy is going to be interviewed live by our CEO, Lucy McKay, on Instagram so head over there, follow and watch.
Sandy at Findacure’s Drug Repurposing Conference
In February 2020 Sandy gave an excellent presentation about her experience at The Findacure Drug Repurposing Conference in which she highlighted the mental health burden of living with and caring for someone with a rare disease. She also described how little theory and practical education she received in genetics and rare disease. This kind of insight explains why so many people with a rare disease feel unsupported by their clinicians. Watch Sandy’s enlightening talk below.
It is really important to hear from medical students and clinicians about their exposure (or lack of) to rare disease in medical training. We cannot start tackling the diagnostic odyssey without involving those who are at the first step of formal diagnosis – frontline doctors. More often than not the first doctor a patient sees when they present to a GP or A&E will be a doctor in training. So we need to listen to medics to understand where they’re coming from so that we can train them to #daretothinkrare.Dr Lucy McKay, CEO of Medics4RareDiseases
What is the Student Voice Prize?
The Student Voice Prize is an annual, international essay competition that focuses on raising the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training.
Findacure and M4RD host the competition together and the winner gets published in The Orphanet Journal of Rare Diseases! There are a number of other prizes available such as speaking opportunities like the one Sandy benefitted from. Check out The Student Voice Prize 2020 and remember to submit your entry before 16th November!