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Resources -- Please add new resources

by Administrator — last modified Feb 26, 2009 09:04 AM

http://www.orpha.net Orphanet is a database of information on rare diseases and orphan drugs for all publics available in five languages. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases. Orphanet includes a Professional Encyclopaedia, which is expert-authored and peer-reviewed, a Patient Encyclopaedia and a Directory of expert Services in Europe and some countries from North Africaa and Middle East. This Directory includes information on relevant clinics, clinical laboratories, research activities and patient organisations.

Link Unique — by Administrator — last modified Oct 05, 2008 06:26 PM
A site for patients and their families with rare chromosomal disorders.
Link OMIM - Online Inheritance in Man — by Administrator — last modified Oct 05, 2008 06:25 PM
A web site for geneticists to look up genes and genetic diseases
Link Decipher — by Administrator — last modified Oct 05, 2008 06:45 PM
A site focused on chromosomal insertions, duplications and deletions. Intended for geneticists, it is maintained at the Sanger Center in Hixton England and supported by the Wellcome Charitable Trust
Link Syndromes without a Name (SWAN) — by Administrator — last modified Jan 19, 2009 07:16 PM
A user-oriented web site offering resources for parents and patients with Syndromes without a Name. The site also provide a place to post the history, physical findings and clinical course of the affected persons.
Link Personal Genome Project — by Nick O — last modified Jan 17, 2009 08:01 PM
 
Link Gene Test — by Nick O — last modified Jan 17, 2009 08:04 PM
 
Link Gene Clinics — by Nick O — last modified Jan 17, 2009 08:05 PM
 
Folder Terminology and Glossaries — by Nick O — last modified Jan 17, 2009 08:13 PM
 
Link NIH Undiagnosed Diseases Program — by Alycia Shilton-Lloyd — last modified Jan 21, 2009 09:00 PM
NIH clinical study. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals: To provide answers to patients with mysterious conditions that have long eluded diagnosis and to advance medical knowledge about rare and common diseases. Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.
Link Hyoumanity — by Brad Kittredge — last modified Jan 27, 2009 09:13 PM
Hyoumanity is committed to improving awareness and understanding of the prevalence, causes, and implications of persistent nondiagnosis and misdiagnosis and to the development of tools to assist and empower patients and doctors to resolve complex cases.
Link diybio — by Bryan Bishop — last modified Feb 03, 2009 08:54 AM
DIYbio is an organization that aims to help make biology a worthwhile pursuit for citizen scientists, amateur biologists, and DIY biological engineers who value openness and safety. This will require mechanisms for amateurs to increase their knowledge and skills, access to a community of experts, build, share and design open source hardware, the development of a code of ethics, responsible oversight, and leadership on issues that are unique to doing biology outside of traditional professional settings.
Link SNPedia — by Greg Lennon — last modified Aug 25, 2010 08:31 PM
SNPedia is a wiki sharing information about the effects of DNA variations. It is the background data source used by the personal genomics program Promethease.
Link Promethease — by Greg Lennon — last modified Aug 25, 2010 08:35 PM
Promethease is a downloadable program that produces a (free) personal genome report by comparing a user's genome data, obtained either from DNA microarrays (chips) or full genomic sequence, to the information in SNPedia, the wiki collecting information about DNA variations with known effects.
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