Genetic Diseases Act

In 1976, P.L. 94-278, the National Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic Diseases Act, consolidated the separate 1972 acts for sickle cell anemia (P.L. 92-294) and Cooley's anemia (P.L. 92-414), and added six other genetic conditions. P.L. 94-278 aimed "to establish a national program to provide for basic and applied research, research training, testing, counseling, and information and education programs with respect to genetic diseases, including sickle cell anemia, Cooley's anemia, Tay-Sachs disease, cystic fibrosis, dysautonomia, hemophilia, retinitis pigmentosa, Huntington's chorea, and muscular dystrophy." In 1978, Congress amended the Act to include "genetic conditions" (P.L. 85-262). Congress appropriated more than $35 million over the course of three fiscal years (1979-1981) to implement the National Genetic Disease Act (P.L. 95-626).

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act

President Obama signs into law the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (S. 2465). This important legislation authorizes the U.S. Department of Health and Human Services (HHS) to award data collection grants to states, academic institutions, and non-profit organizations with the goal of better understanding the prevalence and distribution of heritable blood disorders, including sickle cell disease, as well as the associated health outcomes and complications of these disorders.

NHBVLBDP Established

The National Heart, Blood Vessel, Lung, and Blood Act of 1972 (P.L. 92-423) enlarged institute authority to advance the national attack on heart, blood vessel, lung, and blood diseases. The act provided for expanded, intensified, and coordinated institute activities in accordance with a comprehensive, specified National Heart, Blood Vessel, Lung, and Blood Disease Program to be planned by the director and the Advisory Council.

It also called for establishment of prevention and control programs; development of 15 new centers for basic and clinical research, training, demonstration, and prevention programs for heart, blood vessel, and blood diseases; and development of 15 such centers for chronic lung diseases.

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