Genetic Alliance Research Paper

Satisfactory Essays
American organisations and networks
1. Genetic Alliance
Genetic Alliance is world’s leading US based non-profit health advocacy organisation, which includes in its network more than 1200 disease-specific advocacy organisations, universities, government agencies, private companies and public policy organisations. The organisation was established by Joan O. Weiss in 1986, Washington DC. Genetic Alliance has established a number of programs aimed to improve the understanding of genetics and advocacy, to advance important campaigns and to institute strong networks. Genetic Alliance is managing a Biobank since 2003.
Current programs running at Genetic Alliance include:
• Access to Credible Genetics Resources Network
• Consumer Focused Newborn Screening
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The National Institute of Health and Medical Research, France (INSERM) has initiated Orphanet database. It is currently updated by 38 countries of European consortium, coordinated by France. It is published in English, German, French, Italian, Spanish and Portuguese which is freely accessible to both physicians and patients. Orphanet provides services which include inventory, classification and encyclopaedia of rare disease, inventory of orphan drugs, OrphaNews, Report Series and diagnostic tools searchable by sign and symptoms.
2. European Platform for Patient Organisations, Science and Industry (EPPOSI)
EPPOSI is an international association committed to support healthcare policymaking. It is an advisory committee for pharmaceutical industries, academic and patient organisation to interact and exchange knowledge. The members of EPPOSI include five industrial associations and 18 large pharmaceutical and biotechnology companies. Through advanced innovation programs, EPPOSI research is focused on chronic conditions management (AIP-CCM), health technology assessment (AIP-HTA), innovation in healthcare (AIP-INNO) and rare diseases
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