How can we get patient families involved with research?

Research General
1

Besides being a study subject how else can we be involved?

2

Participate in conversations via the learning network, facebook group, go to the family conferences, fundraise, volunteer to be on a committee… Lots of ways.

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3

Great suggestions! Any interest in being a part of developing the research project with a researcher?

@KMorris24 @Bob_Mitchell @robinzmitchell _Mitchell @MikeMorris @Hannah_Humphrey @Hassan50 @Adriana @Blake_Moore @Nigelmurphy @sandave_cohen

4

The workshops are a great way to be part of a research team at the very beginning when ideas are being generated and research questions are being formed. Families can absolutely be huge contributors in this process. We know our kids and can give real feedback into what things would or wouldn’t work throughout the research process. “Nothing about us without us.”

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