The Rare Disease Podcast
Interviews with patients, clinicians, advocates, students, researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics4RareDiseases who are asking medical professionals to #daretothinkrare in order to improve diagnosis, clinical care and research in this neglected but really important field of medicine. 350 million people in the UK live with a rare disease so while each disease is individually rare, together rare diseases are common.
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The Rare Disease Podcast
My son with PTEN with Kelly Kearley from PTEN UKI
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For this week's episode of the podcast, Lucy chats with Kelly Kearley who is the charity manager for PTEN UKI.
Kelly's son Austin was diagnosed with P10 harmatoma tumour syndrome. Hamatoma Tumor Syndrome, or often shortened to P10, is a rare genetic condition. And it causes multiple cancers in adulthood and autism in childhood.
You can find out more about PTEN UKI by visiting their website https://ptenuki.org/
More information about Cerebra, also mentioned in this podcast can be found here https://cerebra.org.uk/
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