Can A Mobile App Boost The Signal About Rare And Neglected Diseases?

Alex Clark | Pistoia Alliance | September 12, 2012

One of the great things about mobile apps is that they are low-profile, easy-to-adopt tools that theoretically could remove traditional barriers between information sources. In fact, as I discussed in my last entries, they have the potential to create a whole new ecosystem of information and users. Nowhere is this more evident, or more important, than in the area of rare and neglected disease research, where disparate (and often desperate) information seekers need better ways to access and share information. I’ve invited Pistoia Alliance board member Sean Ekins to talk about the Open Drug Discovery Teams (ODDT) app we developed together as a “skunk works project” for the Dragons’ Den session at the Pistoia Alliance F2F meeting in February 2012. The app has come a long way since that initial presentation—but more on that in Part 2.

Today we are seeing parents becoming bona fide world experts in rare diseases out of necessity, as they form foundations and companies to fund research to help their sick children. Take Jill Wood, who founded when her son was diagnosed with Sanfilippo Syndrome, or Lori Sames, who founded to promote study on her daughter’s disease, giant axonal neuropathy.  There are many others...