Below are some helpful Internet resources on this topic. Mayo Clinic does not own or control any of these sites and is not responsible for their content. Inclusion of these sites does not imply endorsement by Mayo Clinic.
www.rarediseases.org
National Organization for Rare Disorders (NORD)
www.ninds.nih.gov
National Institute of Neurological Disorders and Stroke
www.irsa.org
International Radiosurgery Support Association (IRSA)