National Electronic Library for Health Specialist Libraries | NHS sponsored specialist libraries primarily aimed at professionals | www.nhs.uk/rarediseases (in development) http://libraries.nelh.nhs.uk/respiratory |
GIS-Institut des Maladies Rares | French site for developing research into rare diseases |
www.institutmaladiesrares.net
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International Network of Paediatric Surveillance Units | International surveillance of rare childhood diseases |
www.inopsu.com
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Orphanet | European reference portal dedicated to information on rare diseases and orphan drugs |
www.orpha.net
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Orphanet UK | UK site feeding directly into main Orphanet | www.orphanet.co.uk (in development) |
Office of Rare Disorders | US site providing information about research, scientific conferences, rare and genetic diseases and a portal to information on rare diseases |
http://rarediseases.info.nih.gov/
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National Organisation for Rare Disorders | A USA voluntary health agency containing databases on rare diseases serving patients and their families |
www.rarediseases.org
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Contact a Family | Independent 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
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European Organisation for Rare Diseases | An alliance of rare disease patient associations within Europe |
www.eurordis.org
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