ORPHANET
http://www.orpha.net

Alliance Maladies Rares
http://www.alliance-maladies-rares.org

Diamond Blackfan Anaemia support group UK
http://www.diamondblackfan.org.uk

Diamond Blackfan Anaemia support group US
http://www.familyvillage.wisc.edu/lib_dba.htm

Diamond Blackfan Anaemia Foundation
http://www.dbafoundation.org