I have a fraternity brother who is slowly losing his children to a rare neurodegenerative disease called Battens syndrome. He and his wife are watching their 5 year old son fade before there eyes. One of their twin daughters will go through the same process. They are doing everything they can.
If you know someone in such a situation here is a video explaining an amazing example of open source software for collaboration to discover better therapies and solutions. This is insight into open medicine that lets everyone help is a fascinating example of well thought out design, information sharing and participation that may improve many lives.
Imagine what will happen in the very near future when geneology sites with millions of people's profiles (see here) potentially start allowing the uploading and cross posting of raw DNA data while other build tools to study phenotypic expressions of genetic potentials.
The technology is here now and the cost points and pieces are all falling into place. Open genomic posting and analysis in 3-5 years (800-1,200 days) will be an incredibly impactful business.