newsteps.org
Parents and Caregivers | NewSTEPs
https://www.newsteps.org/parents-and-caregivers
Short Term Follow Up. Request a Site Visit. Every year over 4 million US newborns are screened for genetic and metabolic conditions, and hearing loss as part of a process called newborn screening. For babies who test positive for one of these conditions, rapid identification and treatment can make the difference between life and death. For additional information please visit our partner’s websites:. National Coordinating Center for the Genetic and Newborn Screening Service Collaboratives (NCC). In 2004, ...
westernstatesgenetics.org
Western States Genetics Services Collaborative
http://www.westernstatesgenetics.org/links.htm
Other Regional Genetics Collaboratives. Additional Collaborators and Organizations. OTHER REGIONAL GENETICS COLLABORATIVES. Region 1: New England Regional Genetics Group. Region 2: New York-Mid-Atlantic Consortium for Genetics and Newborn. Region 3: Southeast Regional NBS and Genetics Collaborative. Region 4: The Region 4 Midwest Genetics Collaborative. Region 5: Heartland Genetics Services Collaborative. Region 6: Mountain States Genetics Regional Collaborative Center. Baby’s First Test. Evaluation of G...
ibem-is.org
Home Page
https://www.ibem-is.org/Default.aspx
History, Mission, Specific Aims, and Expected Outcomes. Staff, Membership and Partners. Inborn Errors of Metabolism. Inborn Errors of Metabolism Collaborative. IBEM-IS has passed the 1,900 participant mark! As of January 11, 2016, 1,949 participants representing 41 conditions have data entered into the IBEM-IS. Of those 1,949 participants, 1,364 were identified by NBS. Hyperphe/PKU has the largest number of enrollees (465) closely followed by MCAD (351), Biotinidase (208) and Galactosemia (189)&#...Quart...
tloaf.org
Helpful Links
http://www.tloaf.org/links.html
Message From The Co-Founders. What Is Krabbe's Disease? What Is Cystic Fibrosis? What Is Newborn Screening? NBS In Your State. The following links are for information and educational purposes. Listing these resources does not mean that. The Legacy of Angels Foundation. Endorses or recommends any of them. CDC Foundation Newborn Screening Translation Research Initiative. Http:/ www.cdcfoundation.org/newbornscreening. Newborn Screening Translational Research Network:. Https:/ www.nbstrn.org/. Http:/ pediatr...
cimdrn.ca
Links | Canadian Inherited Metabolic Diseases Research Network
http://www.cimdrn.ca/links
Skip to main content. Canadian Inherited Metabolic Diseases Research Network. Canadian Inherited Metabolic Diseases Research Network (CIMDRN). Ottawa, ON K1H 8M5. Canadian Organization for Rare Disorders (CORD). North American Organization for Rare Disorders (NORD). Society for the Study of Inborn Errors of Metabolism (SSIEM). Society for Inherited Metabolic Disorders (SIMD). Maternal Infant Child and Youth Research Network (MICYRN). Newborn Screening Translational Research Network (NBSTRN).
genemedconsultants.com
Resources - Genomic Medicine Consultants
http://www.genemedconsultants.com/resources.html
American Board of Medical Genetics. American College of Medical Genetics and Genomics. American College of Physicians. American Society of Human Genetics. National Human Genome Research Institute. Newborn Screening Translational Research Network. Society of Inherited Metabolic Disorders. Society for the Study of Inborn Errors of Metabolism. Genetics in News and Research. October 24th, 2013. Next Generation Sequencing Technologies in Medical Genetics.
ibem-is.org
IBEM-IS
https://www.ibem-is.org/AboutUs/StaffMembersPartners.aspx
History, Mission, Specific Aims, and Expected Outcomes. Staff, Membership and Partners. Inborn Errors of Metabolism. Staff, Membership, and Partners. Cynthia Cameron, PhD, Principal Investigator. Susan Berry, MD, Principal Investigator. Sally J. Hiner, BS, LBSW, IBEMC Senior Project Coordinator. Shaohui Zhai, PhD, Statistician. Kristi Bentler, MS, RN, PHN, CPNP, Clinical Consultant. Melissa Herrst, BA, Research Assistant. Emory University Department of Human Genetics - SERC. University of Iowa Health Care.
ibem-is.org
IBEM-IS
https://www.ibem-is.org/AboutUs/Default.aspx
History, Mission, Specific Aims, and Expected Outcomes. Staff, Membership and Partners. Inborn Errors of Metabolism. The IBEMC works closely with the Newborn Screening Translational Research Network. National Institute of Child Health and Human Development (NICHD), National Institutes of Health. History of IBEMC, Mission, Specific Aims, and Expected Outcomes. Staff, Membership, and Partners. The Inborn Errors of Metabolism Collaborative: Defining the Natural History of IBEM is funded by the.
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