If you’re just starting your Newborn Screening advocacy journey, one of the most incredible resources available to you is your state’s Newborn Screening advisory board or council.
Almost every state has a Newborn Screening advisory board. These boards are often the decision-makers for which conditions are added to your state’s panel.
Advisory boards usually include geneticists, pediatricians, specialists, lab scientists, and parent advocates. They are passionate about Newborn Screening and will help guide you through your state’s process for adding a condition.
Each state’s NBS advisory board operates differently. However, they typically meet a few times a year to discuss possible additions to the state’s panel, whether from direct nominations or because a condition has been added to the Federal Recommended Uniform Screening Panel (RUSP). They discuss ethics, logistics, cost, and more. Then if they agree that a condition is ready, they will make a recommendation to the state’s Secretary of Health.
Parent advocates are powerful in this process. Only you know what it’s like to have a child with a Leukodystrophy and they need to hear your voice! Be bold, be honest, and be passionate.
Legislation is not necessary to add a condition in all but two states. Building a relationship with your state’s NBS advisory board is a great way to start! Meetings are open to the public and many states hold their meetings virtually now, making it even easier to attend.
Your story matters and can make a difference. By telling advisory boards about your experience, you can help effect change in your state and make Newborn Screening for Leukodystrophies a reality!
LDNBS hosted a panel with present and former members of Newborn Screening advisory boards recently and you can view it here:
To learn more about your state, visit our Newborn Screening resources page and click on your state!