The EveryLife Foundation for Rare Diseases is asking advocates to contact their Representatives to cosponsor the Newborn Screening Saves Lives Act. Legislation to reauthorize the Newborn Screening Saves Lives Act was introduced in the House of Representatives by Representative Lucille Roybal-Allard on May 2, 2019. Introduction in the Senate is expected soon. H.R. 2507, the Newborn Screening Saves Lives Reauthorization Act, will continue critical federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for newborn screening. Without reauthorization, these programs will expire at the end of Fiscal Year 2019.
As an advocate for patients with rare diseases you are a very important part of the legislative process. You can make the difference as you are the voices your legislators want, or in some cases do not want, but need to hear.