Where can I get information on some very rare genetic disorders?

The web & your doc. Three good sources are the centers for disease control website for genomic medicine (http://www.Cdc.Gov/genomics/), the national library of medicine's genetics home reference website (http://ghr.Nlm.Nih.Gov/), and the genetic alliance website (http://www.Geneticalliance.Org/). If you worry about yourself or a family member, the best place to start is with your personal physician.