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Designing Tech for Rare Diseases
- 1. DESIGN & DEVELOPMENT OF A SOCIOTECHNICAL INTERVENTION FOR PEOPLE WITH RARE DISEASES 10% of People have a Rare Disease Haley MacLeod Indiana University hemacleo@indiana.edu If everyone with a rare disease lived in the same country, it would be the 3rd most populous nation in the world. 1) How can we conduct user centered design research when participants are diverse and geographically dispersed? 2) How can we design technology to support people with different types of diseases? Study 1: Interview Study Study 2: Survey Study 3: Co-Design Study Study 4: Field Deployment “Nobody’s ever heard of it. If I said I had MS everybody would know what I was talking about and they would know what to expect. It’s not obvious that there is anything wrong with me at all. So I think that some people think that maybe I’m putting them on a bit.” 7,000 There are more than different rare diseases. And new ones are being discovered all the time!