HGVS Database Links

Clinical & Patient Aspects Databases

Last Updated 18 November 2005

If you would like a particular site listed here, please send the details in the format below to the Webmaster.

Database	Address	Curators
Alzheimer Research Forum	http://www.alzforum.org/	National Institute of Ageing
Canadian Genetic Diseases Network	http://www.cgdn.generes.ca	Medical Research Council of Canada
Case Health This site is dedicated to collecting, storing, cross-referencing, and sharing health event case studies from families and friends	http://www.casehealth.com.au/case/about.html	Case Health
CF Web- Online Information about Cystic Fibrosis	http://www.cf-web.org/	Robert Calhoun and Michael Ernst
Council of Regional Networks (CORN) for Genetic Services	http://www.cc.emory.edu/PEDIATRICS/corn/corn.htm	Maternal and Child Health Bureau, US Dept. of Health & Human Services
DMD Registry The UK registry for participants with DMD/BMD	www.dmdregistry.org	Robin Sharp and Nick Catlin
FacioScapuloHumeral Society (Landouzy-Dejerine disease, FSH, FSHD) (info for a better understainding of this disease)	http://www.fshsociety.org	FacioScapuloHumeral Society, Inc., U.S.A.
Favism database- Glucose 6-phosphate dehydrogenase deficiency. (Patient info.)	http://rialto.com/favism/index.htm	Mestre-Venice
GeneClinics:Medical Genetics Knowledge Base	http://www.geneclinics.org	Roberta A. Pagon Seattle, WA, U.S.A
Genetic Alliance	http://www.geneticalliance.org	Genetic Alliance
Genetic Health Resource to enable to understand genetic advances, can asses your risk for common inherited diseaes	http://www.genetichealth.com/	Genetic Health Inc. San Mateo, CA, U.S.A.
Genetic and Rare Conditions Site Lay Advocacy Groups, Support Groups, Information on Genetic Conditions and Birth Defects for Professionals, Educators and Individuals (A HUGE collection)	http://www.kumc.edu/gec/support/	Medical Genetics, University of Kansas Medical Center, USA
Health on the Net (HON)	http://www.hon.ch/	Health On the Net Foundation (HON) Geneva, Switzerland
International Diabetes Website	http://www.idi.org.au/	International Diabetes Institute Australia
March of Dimes Great site for info on birth defects, as well as info for those planning or just had a baby	http://www.modimes.org/	The March of Dimes, U.S.A.
NORD National Organization for Rare Disorders (excellent site with a database of over 1,100 diseases included, as well as foundations, organizations & patient support groups, and other info of interest)	http://www.rarediseases.org/	National Organization for Rare Disorders, Inc., U.S.A
Pancreatica.Org: Confronting Pancreatic Cancer (a huge compliation of the world's clinical trials against pancreatic cancer for patients and physicians)	http://www.pancreatica.org	Lorenzen Cancer Foundation, CA, U.S.A.
Pancreatic Tumour Registry	http://www.path.jhu.edu/pancreas	John Hopkins Univ. Baltimore