Newborn Study

Physician-researchers conduct a survey on behalf of NHF's Medical and Scientific Advisory Council to gauge current practices regarding newborn intracranial hemorrhage and obstetrical care and mode of delivery of pregnant hemophilia carriers. The survey queried obstetricians, neonatologists, and hematologists in the United States.

Behavioral Science Study

Over the course of 18 months, NHF worked with chapters throughout the U.S. to learn more about the nature and needs of adolescents with hemophilia. Results were presented at the 1968 meeting of the World Federation of Hemophilia in Montreal, and were also published in the December 1969 of Vocational Guidance Quarterly.

VWD Survey

On November 8, 2004, Ann-Marie Nazzaro, PhD and Lauren Daitch, MPH, presented novel VWD findings from an NHF and CDC designed study via Project Red Flag about women's knowledge of VWD. The presentation occurred at a meeting of the American Public Health Association.

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).

Kennedy Sponsors HTCs

On January 15, 1975, Sen. Edward Kennedy introduces the creation of national hemophilia treatment centers within "An Act to amend the Public Health Service Act and related health laws to revise and extend the health revenue sharing program, the family planning programs, the community mental health centers program, the program for migrant health centers and community health centers, the National Health Service Corps program, and the programs for assistance for nurse training, and for other purposes."