For the past several years, our Director of Advocacy, Lesa Brackbill, has been learning, listening, and observing the Newborn Screening landscape in the United States. This knowledge has been housed in a spreadsheet for over three years, but LDNBS has now taken that information and made it more accessible to advocates!
These plans serve as a guide of what we can expect over the next five years for both conditions. Newborn Screening is complex, and we hope these guides will help you see what your state is expected to do and when it is expected to implement Newborn Screening for MLD and Krabbe Disease.
The great news is that LDNBS anticipates that every state will be screening for Krabbe Disease and MLD by 2028. That sounds so far in the future, but it is actually a fairly quick timeline compared to the journey some conditions have taken.
Each strategic plan is a living document and LDNBS will update the plans whenever new information is available.
We need families in each state willing to help us advocate and we’d love to have a fact sheet for every state! Reach out to firstname.lastname@example.org if you are interested!