18 results
Results
Organization
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Fabry Support & Information Group
(updated on 04/29/10)
It is the mission of the Fabry Support & Information Group to provide the Fabry community and the general public with information, advocacy, education and compassionate support to improve the quality of life and the quality of care for Fabry patients and family members.
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Canadian Fabry Association
(updated on 12/02/09)
To undertake public and private education and awareness, dissemination and publication of information about Fabry disease; initiate, encourage and support research and investigation into its causes and treatment, and to provide funds in respect thereof; to promote better understanding, management and treatment; and to arrange for, coordinate and increase the facilities available for diagnosis, consultation and treatment of those suffering from Fabry disease.
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Fabry International Network
(updated on 09/19/11)
FINs vision is of a world where every person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. The primary aim of the FIN is to facilitate collaboration between organizations to support those affected by Fabry disease. It seeks to do this primarily through enabling communication, promoting best practice and acting as an independent forum for Fabry patients around the world.
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National Fabry Disease Foundation
(updated on 04/30/10)
The mission of the National Fabry Disease Foundation is to help ensure that all individuals with Fabry disease are identified, diagnosed and treated in time to avoid a diminished quality of life or life threatening consequences, to provide assistance to individuals with Fabry disease and their families, to provide Fabry disease education and awareness, to promote continued research and data-gathering to improve treatment opportunities and to find a cure.
Page
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conference2010.logos
(updated on 07/14/10)
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Genetic Alliance 25th Anniversary Annual Conference Logos
(updated on 12/12/11)
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Meet Your Neighbors 2009 Archive
(updated on 01/08/10)
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Meet Your Neighbors Archive
(updated on 11/07/11)
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Newborn Screening Quarterly Newsletter
(updated on 01/30/12)
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pr.scid.achdnc
(updated on 03/25/10)
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statements.ivdmia.guidance
(updated on 09/09/10)
Resource
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Mount Sinai School of Medicine - Clinical and Research Update on Fabry Disease
(updated on 07/29/10)
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Mount Sinai School of Medicine - Fabry Disease: Facts for Patients and their Fam
(updated on 07/29/10)
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National Organization for Rare Disorders (NORD) - Fabry disease
(updated on 07/28/10)
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Clinical Description
Fabry Support & Information Group (FSIG) - What is Fabry disease
(updated on 11/24/09)
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Research
Clinical Trials - Fabry disease
(updated on 11/24/09)
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Research
Online Mendelian Inheritance in Man (OMIM) - Fabry disease
(updated on 11/24/09)
