Expressing the sense of the House of Representatives with respect to Diamond-Blackfan Anemia.

Summary

Recognizes: (1) the importance of the federal government's continued support of Diamond-Blackfan Anemia (DBA) research; and (2) that federal support of comprehensive centers for rare disease patients enhances the ability for experienced doctors to provide the most complete care for each patient. 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 Diamon-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 the life cycle of success realized between the laboratory and applied patient care. Expresses the sense of the House of Representatives that the government has a responsibility to encourage further efforts to clarify the natural history of DBA, continue efforts to raise awareness and ease access to information about DBA, encourage research efforts that will advance treatment options and seek a cure, encourage NIH to develop a cross-institutional research initiative to study ribosomal protein deficiencies in rare inherited disease, and encourage continued federal support of the DBA Comprehensive Clinical Care Centers.

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6 official files

• Engrossed in House (text)

  Engrossed in House · EN · 15 October 2007

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• Engrossed in House (PDF)

  Engrossed in House · EN · 15 October 2007

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• Passed House amended

  summary · EN · 15 October 2007

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• Introduced in House (text)

  Introduced in House · EN · 27 June 2007

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• Introduced in House (PDF)

  Introduced in House · EN · 27 June 2007

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• Introduced in House

  summary · EN · 27 June 2007

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