The Newborn Screening Saves Lives Act was originally introduced to facilitate the spreading of awareness and education related to newborn disease screenings. The screening of newborns has had a major impact on the detection and treatment of many rare diseases and has undoubtedly played a role in saving many lives. There are many disorders and medical conditions that may be treatable in the newborn stage of life but may not be clinically apparent on their own. Some genetic disorders may only become apparent after severe, irreversible damage has already occurred; in some diseases, sudden death may be the first sign that anything was wrong. Screening allows for babies born with rare disorders to have a better chance of getting prompt treatment and surviving their disease. Screening was first implemented in the US during the 1960s.
The EveryLife Foundation for Rare Diseases will be hosting a webinar for educational purposes which will focus on the reauthorization of the Newborn Screening Saves Lives Act. The law is slated to be authorized in September of 2019. The event will allow participants to gain a greater understanding of the impact of this law and newborn screening in general.
The EveryLife Foundation for Rare Diseases is a nonprofit organization which is committed to the advancement of biotechnology innovation for treating rare diseases by advocating and supporting scientifically sound public policy initiatives. The organization believes that through responsible use of the latest technology and proper allocation of resources that more can be done to help the millions of people that are struggling with rare diseases.
Participants will hear from experts such as Rebecca Abbott from the March of Dimes Office of Government Affairs and Debbie Jessup, who serves as Health Policy Advisor for Congresswoman Lucille Roybal-Allard.
The event is scheduled for December 13th, 2018 at 2 pm EST/ 11 am PST.
To register for this webinar and to learn more about the event, click here.
