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.
Podcast distributors create their own transcripts and M4RD doesn’t take responsibility for them
The Rare Disease Podcast
Rare Disease Needs YOU! Want to know why? Listen to find out...
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For this week's episode of the podcast, we need YOU to listen to find out why you should take part in a very important survey!
Lucy and Emma will be discussing The Rare Disease Quality Statements Survey. The aim of the survey is to develop a set of quality statements for what good care looks like in rare diseases.
The survey is open to anyone who has a rare disease, is a family member or carer of someone with a rare disease, including charities and health professionals. Please bear in mind, the survey is to be completed by over 18s – if you are under 18, you must ask a parent or carer to complete the survey on your behalf.
To take part in the survey head to https://www.research.net/r/RPBN59Y now.
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