The folks at RareGenomics, the non-profit that owns this site (and is working away on an updated version of RareShare), have produced a number of audio podcasts that are available through iTunes, see http://tinyurl.com/znezdyk They recently recorded an interview with me where I provide advice on how someone with SCLS -- and many other rare diseases also -- should go about finding a proper hospital and building a medical team to provide patients with the best care possible. I encourage new or recent members of this and other communities to listen to my podcast.