The Hermansky-Pudlak Syndrome Network joined with other patient advocacy groups at Genetics Day on the Hill to ask Congress to maintain funding for the National Center on Birth Defects and Developmental Disabilities (NCBDDD).
Birth defects affect 1 in 33 births in the United States. Additionally, more than 500,000 children are diagnosed with a developmental disability every year. In recent years the NCBDDD, along with all other programs managed by the Centers for Disease Control (CDC) underwent budget cuts.
Some key programs that fall under the NCBDDD include newborn screening for hearing loss, programs working to improve developmental outcomes for children, programs to reduce health care access disparities for people with disabilities and ensuring that disability status is incorporated in all CDC surveys, programs and policies.