The Rare Disease Podcast
3.5 million people in the UK live with a rare disease, so while each disease is individually rare, together rare diseases are common. Hear interviews with patients, clinicians, advocates, students and researchers focusing on rare disease in clinical medicine.
This podcast is brought to you by Medics for Rare Disease. Podcast distributors create their own transcripts and M4RD doesn’t take responsibility for them
The Rare Disease Podcast
Episode 8: Dr Sondra Butterworth on Inclusivity
Let us know what you think of this episode! We read every comment we receive.
Dr Sondra Butterworth is from a rare disease family, a carrier of a rare disease and her PhD focused on the quality of life and social support of people living with rare diseases. She talks to Lucy about what it's like to come from a poor, black, rare disease family in Cardiff and how she's turning both her personal and professional experiences into real change for rare disease communities. Sondra is the founder of RareQoL and the Whose Voice is it Anyway campaign - started because some groups within the rare community feel that their voices go unheard #whosevoice
Also some RuPaul's Drag Race chat. RuPaul...if you're listening, we're your biggest fans.
RareQoL: https://rareqol.co.uk/
#WhoseVoice report: https://www.m4rd.org/2021/10/26/whose-voice/
Narrative Based Medicine review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851389/
Rita Charon's Tedx on Narrative Based Medicine: https://www.youtube.com/watch?v=7Uc0jmUkA3E
No-one's Listening report on Sickle Cell Society's website: https://www.sicklecellsociety.org/no-ones-listening/
Kimberlé Crenshaw's talk on intersectionality: https://www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en
Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.
M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.
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