The Claire Altman Heine Foundation operates a highly effective advocacy program aimed at altering public policy to implement a national, pan-ethnic carrier screening protocol for Spinal Muscular Atrophy. By utilizing targeted educational materials, regular in-person communication by CAHF staff, and an organized grassroots effort involving families from across the country, CAHF has educated policymakers in the federal government and professional societies about SMA, carrier testing technology, and the importance of developing national guidelines and recommendations for health care providers and patients.

In its advocacy efforts, CAHF has worked closely with many elected officials and scientific leaders in the public and private sectors. This includes United States Senators, Members of the U.S. House of Representatives, and senior Congressional staff; senior officials in federal agencies such as the National Human Genome Research Institute (NHGRI), the National Institute of Child Health and Human Development (NICHD), and the Centers for Disease Control and Prevention (CDC); and leadership for professional societies including the American College of Medical Genetics (ACMG), the American College of Obstetrics and Gynecology (ACOG), and the National Society of Genetic Counselors (NSGC).