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
Not your usual diabetes
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Do you know what DIDMOAD stands for? Get your medical dictionary ready...diabetes insipidus, diabetes mellitus, optic atrophy and deafness aka Wolfram Syndrome. This week Lucy is joined by Abby who is a young person living with Wolfram Syndrome, Tracy whose daughter has WS leading her to found Wolfram Syndrome UK with her husband and finally prof Tim Barrett from Birmingham Women's and Children's Hospital who is a Children's Diabetes and Endocrine Consultant.
We explore the issues of diagnosis, variability in Wolfram Syndrome, living with complex needs and an invisible condition as well as research in rare disease. We really packed it into this episode!
Wolfram Syndrome UK
Diabetes Genes
Orphanet
Gene Reviews
Clinical trials.gov
This activity is partially funded by:
Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI. Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.
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M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare