Announcing Our Online Rare Disease Community
In the fall of 2013 I put up a post on the Center for Open Source listserv at Rensselaer Polytechnic Institute (RPI) in Troy, NY. The post sought the assistance of faculty and staff in designing online applications that could mobilize the rare disease community. A recent study concluded patients wait an average of 7 years for a diagnosis. Even then they face a life where cures and standardized treatments are few and far between; funding for research is scarce and awareness of their problems is non existent.
Luis Ibanez, then adjunct professor of Open Source Technology and currently at Google NYC emailed me within 24 hours. Our first hackathon was held on the SUNY Albany campus in September of 2013, organized by the ASIS&T UAlbany Student Chapter. We held our seventh hackathon last Saturday and put up our online community this week. Our next one will be held on Saturday, March 7, 2015.
Our goals are simply stated: to facilitate faster cures; more efficient care; increased basic research and an enhanced awareness of the hurdles faced by those with rare and complex disorders.
It will take a worldwide community to tackle these problems. Please join us at
New York State Rare Disease Alliance