The Power of Rare Disease Patients – From Passing Laws To Starting BioTechs


Thanks to the Pew Internet Foundation, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them “healthcare superheroes.” Through our experience […]

Wall Street Journal Reports – When Patients Using Social Networks To Spur Research


Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On When Katherine Leon began feeling crushing chest pain six weeks after the birth of her second child, doctors were perplexed about what was causing her symptoms. Ms. Leon was then 38 years […]