Learn more about research

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

Andy: Finding out about taking part in research