Law and Government Legislation regarding 'Hereditary diseases' in Federal Government

To amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. 10/15/2007--Introduced. Newborn Screening Saves Lives Act of 2007 - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel. Adds as a condition for eligibility for grants for screening, counseling, or health care services to newborns and children having, or at risk for, heritable disorders that an entity assure that it has or is implementing guidelines [...]

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A bill to authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases, and for other purposes. 9/12/2007--Introduced. SMA Treatment Acceleration Act - Requires the Director of the National Institutes of Health (NIH) to upgrade and unify existing spinal muscular atrophy (SMA) clinical trial sites to establish a national clinical trials network for SMA. Requires the Director of NIH to ensure that such network: (1) conducts coordinated, multisite, clinical trials of pharmacological approaches to the treatment of SMA; and (2) rapidly and effectively disseminates scientific findings to the field.Requires the Director of NIH to: (1) establish an SMA data coordinating center; and (2) expand and intensify NIH programs with respect to preclinical translation research and medicinal chemistry related to SMA.Requires the Secretary of Health and Human [...]

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To authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases, and for other purposes. 8/2/2007--Introduced. SMA Treatment Acceleration Act - Requires the Director of the National Institutes of Health (NIH) to upgrade and unify existing spinal muscular atrophy (SMA) clinical trial sites to establish a national clinical trials network for SMA. Requires the Director of NIH to ensure that such network: (1) conducts coordinated, multisite, clinical trials of pharmacological approaches to the treatment of SMA; and (2) rapidly and effectively disseminates scientific findings to the field.Requires the Director of NIH to: (1) establish an SMA data coordinating center; and (2) expand and intensify NIH programs with respect to preclinical translation research and medicinal chemistry related to SMA.Requires the Secretary of Health and Human Services,[...]

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To provide for programs that reduce the need for abortion, help women bear healthy children, and support new parents. 7/26/2007--Introduced. Pregnant Women Support Act - Allows the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to make grants to states for collecting and reporting abortion surveillance data. Requires health facilities that perform abortions to obtained informed consent from a pregnant woman seeking an abortion. Amends title XXI (State Children's Health Insurance Program) (SCHIP) of the Social Security Act to allow states to extend health care coverage to an unborn child. Amends the Public Health Service Act to prohibit a health insurance issuer offering individual coverage from imposing a preexisting condition exclusion or a waiting period or otherwise discriminating against a woman on the basis that she is pregnant. Allows the Secretary to make grants [...]

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A bill to amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. 4/8/2008--Passed House without amendment.    (There are 2 other summaries) (This measure has not been amended since it was passed by the Senate on December 13, 2007. The summary of that version is repeated here.)Newborn Screening Saves Lives Act of 2007 - (Sec. 2) Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to: (1) provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders; (2) provide education and training in newborn [...]

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To amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions. 7/19/2007--Introduced. Prenatally Diagnosed Condition Awareness Act of 2007 - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally diagnosed conditions, including the awarding of grants, contracts or cooperative agreements to: (1) collect, synthesize, and disseminate current scientific information; and (2) coordinate the provision of, and access to, supportive services for patients affected, which [...]

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A bill to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. 7/18/2007--Introduced. Prenatally and Postnatally Diagnosed Conditions Awareness Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions, including the awarding of grants, contracts or cooperative agreements to: (1) collect, synthesize, and disseminate current scientific information; and (2) coordinate the provision of, and access to,[...]

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A bill to amend the Public Health Service Act to improve newborn screening activities, and for other purposes. 6/27/2007--Introduced. Screening for Health of Infants and Newborns Act or the SHINE Act - Amends the Public Health Service Act to require the Director of the Centers for Disease Control and Prevention (CDC) to develop guidelines that states may follow in reporting data from newborn screening tests. Requires the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to develop guidelines to: (1) monitor and evaluate newborn screening activities; and (2) coordinate the results of surveillance activities. Requires the Secretary, acting through the Director of CDC and the National Center on Birth Defects and Developmental Disabilities, to develop a surveillance system for newborn screening. Directs the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns [...]

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Expressing the sense of the House of Representatives with respect to Diamond-Blackfan Anemia. 10/15/2007--Passed House amended.    (There is 1 other summary) Recognizes: (1) the value of the identification of Diamond-Blackfan Anemia (DBA) in identifying implications of cancer predisposition and understanding human development and the molecular basis for certain birth defects; and (2) the importance of centers providing complete care and treatment leading to an increase in correct and early diagnosis.Commends: (1) Schneider Children's Hospital for providing the first DBA Comprehensive Clinical Care Center and developing the DBA Patient Registry; and (2) the Daniella Maria Arturi Foundation and the Diamond-Blackfan Anemia Foundation for their efforts to facilitate collaboration among the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to achieve a successful multidisciplinary approach aimed at shortening [...]

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To amend the Public Health Service Act to improve newborn screening activities, and for other purposes. 6/27/2007--Introduced. Screening for Health of Infants and Newborns Act or the SHINE Act - Amends the Public Health Service Act to require the Director of the Centers for Disease Control and Prevention (CDC) to develop guidelines that states may follow in reporting data from newborn screening tests. Requires the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to develop guidelines to: (1) monitor and evaluate newborn screening activities; and (2) coordinate the results of surveillance activities. Requires the Secretary, acting through the Director of CDC and the National Center on Birth Defects and Developmental Disabilities, to develop a surveillance system for newborn screening. Directs the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns [...]

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To establish grants to provide health services for improved nutrition, increased physical activity, obesity and eating disorder prevention, and for other purposes. 6/12/2007--Introduced. Improved Nutrition and Physical Activity Act or the IMPACT Act - Amends the Public Health Service Act to expand an existing grant program for training for health profession students to include the treatment of individuals who are overweight, obese, or have eating disorders. Allows the Secretary of Health and Human Services to award grants for the training of primary care physicians and other health professions on how to identify, treat, and prevent obesity or eating disorders and aid individuals who are overweight or obese or who suffer from eating disorders. Requires the Secretary, acting though the Director of the Centers for Disease Control and Prevention (CDC), to award grants for the planning and implementation of programs that promote healthy eating behaviors and physical [...]

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Expressing the sense of Congress in support of further research and activities to increase public awareness, professional education, diagnosis, and treatment of Dandy-Walker syndrome and hydrocephalus. 5/24/2007--Introduced. Commends the Director of the National Institutes of Health (NIH) for working with leading scientists and researchers to organize the first NIH conference on hydrocephalus in September 2005 and the Inaugural Cerebellar Development: Bench to Bedside International Conference in November 2006.Expresses the sense of Congress that: (1) the Director of NIH should continue the current collaboration, with respect to Dandy-Walker syndrome, among the National Human Genome Research Institute, the National Institute of Biomedical Imaging and Bioengineering, the National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, and the Office of Rare Diseases; (2) further research into such syndrome should be [...]

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A bill to secure the promise of personalized medicine for all Americans by expanding and accelerating genomics research and initiatives to improve the accuracy of disease diagnosis, increase the safety of drugs, and identify novel treatments. 3/23/2007--Introduced. Genomics and Personalized Medicine Act of 2007 - Directs the Secretary of Health and Human Services to: (1) establish the Genomics and Personalized Medicine Interagency Working Group (IWG) to facilitate collaboration, coordination, and integration of activities among federal agencies relating to genomic research and initiatives; (2) establish a national biobanking distributed database for the collection and integration of genomic data and associated environmental and clinical health information; (3) establish a grant program for academic medical centers and other entities to develop or expand biobanking initiatives; (4) improve genetics and genomics training for diagnosis, treatment, and counseling of adults and [...]

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To amend the Public Health Service Act, the Employee Retirement Income Security Act of 1974, and the Internal Revenue Code of 1986 to require that group and individual health insurance coverage and group health plans provide coverage for treatment of a minor child's congenital or developmental deformity or disorder due to trauma, infection, tumor, or disease. 3/22/2007--Introduced. Children's Access to Reconstructive Evaluation & Surgery (CARES) Act of 2007 - Amends the Public Health Service Act, the Employee Retirement Income Security Act of 1974 (ERISA), and the Internal Revenue Code to require a group health plan, and a health insurance issuer offering group coverage, that cover surgical benefits to also cover outpatient and inpatient diagnosis and treatment of a congenital or developmental deformity, disease, or injury of a minor child (defined as child under the age of 22).Requires that such coverage: (1) be subject to pre-authorization or pre-certification [...]

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To amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. 3/21/2007--Introduced. Newborn Screening Saves Lives Act of 2007 - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Associate Administrator of the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA), to awards grants to eligible entities to: (1) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel; (2) develop educational programs about newborn screening for parents, families, and patient advocacy and support groups; and (3) establish operate a system to assess and coordinate [...]

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To provide for programs that reduce the number of unplanned pregnancies, reduce the need for abortion, help women bear healthy children, and support new parents. 2/15/2007--Introduced. Reducing the Need for Abortion and Supporting Parents Act - Requires the Secretary of Health and Human Services to make grants to provide education on preventing teen pregnancies.Provides for: (1) grants to prevent teen pregnancy; and (2) a national center for parents of adolescents to support parents in preventing teen pregnancy.Amends title XIX (Medicaid) of Social Security Act to expand coverage of family planning services. Sets forth requirements for primary care clinics that receive federal financial assistance and provide abortion services.Expands state options to provide health care coverage to low-income pregnant women.Title X Family Planning Services Act of 2007 - Authorizes appropriations for voluntary family planning projects.Amends the Public [...]

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A bill to amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. 2/15/2007--Introduced. Newborn Screening Saves Lives Act of 2007 - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Associate Administrator of the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA), to awards grants to eligible entities to: (1) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel; (2) develop educational programs about newborn screening for parents, families, and patient advocacy and support groups; and (3) establish operate a system to assess and coordinate [...]

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A bill to provide increased Federal funding for stem cell research, to expand the number of embryonic stem cell lines available for Federally funded research, to provide ethical guidelines for stem cell research, to derive human pluripotent stem cell lines using techniques that do not create an embryo or embryos for research or knowingly harm human embryo or embryos, and for other purposes. 1/23/2007--Introduced. Hope Offered through Principled, Ethically-Sound Stem Cell Research Act or the HOPE Act - Requires the Secretary of Health and Human Services to conduct and support research to develop techniques for the isolation, derivation, production, or testing of pluripotent stem cells that have the flexibility of embryonic stem cells and that may result in improved understanding of, or treatments for, diseases and other adverse health conditions, provided that such techniques do not involve: (1) the creation of a viable human embryo for research purposes; (2) the destruction [...]

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