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Newborn Screening for Metabolic and Sickle Cell Disorders Program
Online Resources & Support Groups
Online Resources
- The Sickle Cell Information Center
- Provides sickle cell patient and professional education, news, research updates, and world wide sickle cell resources.
- The Georgia Health
Sciences University Sickle Cell Center
- Provides information regarding the clinical, laboratory, and research services offered by the center.
- Sickle Cell Foundation of Georgia
- Contains hemoglobin fact sheets and information regarding services offered by the Foundation.
- Save Babies Through Screening Foundation, Inc.
- A Parent Resource on Newborn Screening. Provides information for
parents, disease descriptions, information regarding screening in other
states, a resource library, family stories, and much more.
- March of Dimes
- Provides information and its recommendations regarding newborn screening. Georgia Chapter
- American Academy of Pediatrics (National)
- Contains newborn screening fact sheets and other policy statements. Georgia Chapter
- Clinical and Laboratory Standards Institute (CLSI)
- A global, nonprofit, standards-developing organization that promotes the development and use of voluntary consensus standards and guidelines within the healthcare community.
National Newborn Screening and Genetics Resource Center (NNSGRC).
- National Newborn Screening and Genetics Resource Center (NNSGRC)
- Provides newborn screening and genetics information and resources to benefit health professionals, the public health community, consumers and government officials.
- Genetics Home References
- A genetics information resource for healthcare providers and parents.
- Emory Genetics Laboratory
- The information site for patients and physicians regarding laboratory testing and clinical genetics services offered through the Department of Human Genetics at Emory University.
- Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency
- A Guide for patients and families.
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Medium Chain Acyl-CoA Dehydrogenase Deficiency
- A Guide for Parents.
- National Organization for Rare Disorders (NORD)
- A federation of non-profit voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Provides a database of over 1000 rare disorders and their support groups.
- Expanded Newborn Screening Using MS/MS
- The website for a multi-state collaborative project that will address the financial, ethical, legal and social issues (FELSI) surrounding the use of MS/MS for neonatal metabolic screening.
Cystic Fibrosis Resources
Support Groups
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