Living with a rare disease

New thinking, new ideas


Dr. Haley MacLeod Ph.D.

Haley MacLeod, a young Canadian student who has recently completed a PhD study In Health Informatics at Indiana University, has come up with some fresh thinking and some novel ideas about the potential for tangible mutual support amongst people with rare diseases.


Haley makes the point that, seen individually, rare diseases are just that… rare, but given that there are around 7,000 rare diseases, if everyone in the world with a rare disease lived in the one country, it would be the third largest country on earth, behind only China and India in numbers.


Haley says “A huge number of the population aren’t getting the resources they need. I’m interested in the common experiences that come up as a result of having something so rare and ways we can support that through online social communities or through tools to connect with family members. What excites me the most is technology that can really make a difference in the lives of everyday, normal people, especially in the context of people who might have a chronic disease that isn’t their only priority”. She continues “I’m interested in ways technology can help them balance picking up their kids from soccer practice with trying to get exercise. I want to find a way to help someone manage their diabetes while still allowing them to go to dinner with their friends”.


To help get her message across, Haley made a YouTube video featuring a dance performance and dialogue to convey her thoughts and ideas … definitely worth watching!


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