EP13: Mixed data methods in rare disease and how patient narratives can impact the diagnostic journey with Dr Sondra Butterworth

On today’s episode of Signalise: a Dazzle4Rare podcast, we’re joined by Dr Sondra Butterworth PhD, a community health psychologist and so much more. Since discovering she was a carrier of a rare gene, she began to examine the patient journey and how patient narratives can impact the diagnostic journey. Through her work with RareQol they released Whose Voice is it Anyway, a rare community networking campaign. She has collaborated with Medics4RareDisease and participated in many rare disease consultations and other collaborative projects. 

You can find Dr Butterworth on LinkedIn and through the RareQol website. You can reach out to the team at RareQol at info@rareqol.co.uk. 

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