There are many agencies in the US government with policies or services that can impact the lives of people with ITP and other platelet disorders. The Centers for Disease Control and Prevention (CDC), a division of the Department of Health and Human Services (HHS) provides information and establishes programs to monitor diseases and help protect our health. Another division of HHS, the Food and Drug Administration (FDA), approves new treatments and monitors the safety of those that are on the market. The National Heart Lung and Blood Institute (NHLBI), a part of the National Institutes of Health (NIH), funds education and research on blood diseases. The National Institute of Environmental Health Sciences (NIEHS), another part of the NIH, examines how the environment influences disease.
PDSA has contact with all of these agencies to promote awareness, advocate for more research, promote the approval of treatments, and monitor aspects of the environment that may cause or worsen ITP.
Present at the NIH - Caroline Kruse, PDSA’s Executive Director, spoke at the annual Public Interest Organization meeting of NHLBI.
Work with the CDC - PDSA staff attended the first ever conference on Blood Disorders in Public Health sponsored by the CDC.
Testify at FDA hearings - Joan Young, PDSA Founder, testified at the FDA hearings dealing with the approvals of the thrombopoietin mimetic treatments.
Communicate with the NIEHS - PDSA staff attended a meeting of the patient groups interested in environmental causes of disease. We also search publications from NIEHS to locate and communicate research findings impacting our group.