Short videos about the role and importance of rare disease research have been made with some of our partners, including patients and carers, researchers and health professionals. Please do take a look at why they think it is important for patients and the public to be involved in research:
Hear from member of the public, Marie:
Marie: Why does research matter?
Marie: What’s the best thing about being involved in research as a member of the public?
Marie: Supporting members of the public to take part in research
Marie: Would you recommend taking part in research?
Marie: Encouraging patients and the public to take part in research
Marie: Barriers to taking part in research
Hear from member of the public, Alan:
Alan: What sort of research have you been involved with?
Alan: The importance of research into rare diseases
Alan: Encouraging patients and families to get involved in research
Alan: What would you like to see happening in rare disease research?
Hear from researcher, Professor Andy Tee:
Andy: The importance of carrying out research with patients and the public
Andy: Listening to what families and patients are asking for
Andy: Supporting researchers to involve patients and the public in research
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