National Organization for Rare Disorders (NORD)
About four million babies are screened each year for a panel of rare diseases, the consequences of which can be significantly mitigated if detected and treated just after birth. Newborn screening programs are managed at the state level, but the Federal Government, through the Newborn Screening Saves Lives Act, has created national guidelines to expand and improve the impact of state programs. For the Federal Government to continue its work, the Newborn Screening Saves Lives Act must be reauthorized by September of this year. Thankfully, a bill is likely to be introduced soon to do just that. If you would like to contact your Representative and let them know that millions of babies’ lives depend on the continuation of the Newborn Screening Saves Lives Act, keep an eye out on our Rare Action Center for an opportunity to take action and make your voice heard!