Information resource :Rare Diseases by Julie Quetel

ClinicalTrials.gov
http://www.clinicaltrials.gov/
Department of Health and Human Services Healthfinder
http://www.healthfinder.gov/
Food and Drug Administration Center for Drug Evaluation and Research
http://www.fda.gov/cder/
Food and Drug Administration Office of Orphan Products Development
http://www.fda.gov/orphan/
National Center for Biotechnology Information: Introduction to Genes and Disease
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd
Genetics Home Reference
http://ghr.nlm.nih.gov/
Genetic and Rare Diseases Information Center
http://www.genome.gov/10000409
Medline Plus: Rare Diseases Pathfinder
http://www.nlm.nih.gov/medlineplus/rarediseases.html
National Institute of Arthritis and Musculoskeletal and Skin Diseases Patient Research Registries
http://www.niams.nih.gov/Funding/Funded_Research/registries.asp
National Institute of Arthritis and Musculoskeletal and Skin Diseases Coalition Members
http://www.niams.nih.gov/About_Us/Mission_and_Purpose/outside_org.asp
{National Institutes of Health Clinical Center}
http://www.cc.nih.gov/
National Institutes of Health National Cancer Institute
http://www.cancer.gov/
National Institutes of Health Office of Rare Diseases
http://rarediseases.info.nih.gov/
National Institutes of Health Office of Rare Diseases
http://rarediseases.info.nih.gov/
Rare Diseases Clinical Research Network
http://rarediseasesnetwork.epi.usf.edu/
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/
Canadian Directory of Genetic Support Groups
http://www.lhsc.on.ca/programs/medgenet/
Canadian Organization for Rare Disorders
http://www.cord.ca/
CenterWatch Clinical Trials Listing Service
http://www.centerwatch.com/
National Organization for Rare Disorders
http://www.rarediseases.org/
University of Kansas Medical Center: Genetic and Rare Conditions Site
http://www.kumc.edu/gec/support/
University of Kansas Medical Center: Genetics Education Center
http://www.kumc.edu/gec/
British Paediatric Surveillance Unit
http://bpsu.inopsu.com/
Contact a Family
http://www.cafamily.org.uk/
European Organisation for Rare Diseases
http://www.eurordis.org/
Genetic Alliance
http://www.geneticalliance.org/
Instituto de Investigatión de Enfermedades Raras
http://iier.isciii.es/er/
International Alliance of Patients' Organizations
http://www.patientsorganizations.org/
ORPHANET
http://www.orpha.net/
Socialstyrelsen
http://www.sos.se/smkh/indexe.htm
The European Rare Diseases Therapeutic Initiative
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1188253
NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases
http://www.nih.gov/news/pr/may2006/ncrr-05.htm
Orphan Products: Hope for People With Rare Diseases
http://www.fda.gov/fdac/features/2003/603_orphan.html
President Bush Signs Rare Diseases Legislation
http://www.rarediseases.org/washington/bush_signs
{Prevalence of rare diseases: A bibliographic survey}
http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases.pdf