The cystic fibrosis patient community is very small. With the rare disease affecting just about 70,000 people worldwide, it’s difficult for the community to attract the attention of companies looking to build new medical solutions. The user base just isn’t there. What is there, however, is valuable patient data.
“It’s worth something like $20,000 per patient record, because it helps research, and it helps the pharmaceutical companies,” says Robert Chu, CEO of Embleema, a company he founded in 2017 with the mission of using blockchain technology to give people ownership over their medical data. The cystic fibrosis community, which he’s actively working with, helped inspire his efforts.