ANSWER THE CALL

Email Secretary Xavier Becerra and the Congress to let them know we can no longer wait for a proper diagnosis. Either copy the text below or share your personal story. 

Dear Secretary Becerra, Representatives, and Senators,  

I am writing to you because of the urgent need to standardize and expand newborn screening in America. Over ten thousand children under the age of five die each year and hundreds of thousands of children a year are born with a diagnosable rare disorders, yet go undiagnosed. They suffer greatly being undiagnosed, missing opportunities for treatments, research, and are disenfranchised from entitled government benefits and services because they are undiagnosed.  

The current newborn screening programs are disjointed and discriminatory. The criteria for screening are entrenched in the 1960's dogma of the dismal value of a person with a disability. The current program cannot meet the needs of 10,000 rare disorders known today. 

I am requesting immediate action, from you, to address the failing newborn screening system in America. 

Thank you