Table 1

 Web links for general rare diseases

WebsiteDescriptionAddress
National Electronic Library for Health Specialist LibrariesNHS sponsored specialist libraries primarily aimed at professionalswww.nhs.uk/rarediseases (in development) http://libraries.nelh.nhs.uk/respiratory
GIS-Institut des Maladies RaresFrench site for developing research into rare diseases www.institutmaladiesrares.net
International Network of Paediatric Surveillance UnitsInternational surveillance of rare childhood diseases www.inopsu.com
OrphanetEuropean reference portal dedicated to information on rare diseases and orphan drugs www.orpha.net
Orphanet UKUK site feeding directly into main Orphanetwww.orphanet.co.uk (in development)
Office of Rare DisordersUS site providing information about research, scientific conferences, rare and genetic diseases and a portal to information on rare diseases http://rarediseases.info.nih.gov/
National Organisation for Rare DisordersA USA voluntary health agency containing databases on rare diseases serving patients and their families www.rarediseases.org
Contact a FamilyIndependent UK charity with information on over 2000 disorders, the majority of them rare disorders, and a useful resource for families and health practitioners www.cafamily.org.uk
European Organisation for Rare DiseasesAn alliance of rare disease patient associations within Europe www.eurordis.org