The Leukodystrophy Newborn Screening (LDNBS) Action Network is working with the EveryLife Foundation for Rare Diseases to host a newborn screening bootcamp about leukodystrophies and lysosomal storage disorders.
This will be a 2 part event: the first session is Thursday, June 2nd and the second is Friday, June 3rd, from 1-2pm EST both days. The first day will cover the newborn screening landscape in the United States and the second will cover what advocacy looks like for this cause. Let us know if there’s anything specific you’d like to be discussed by emailing firstname.lastname@example.org!
This is a virtual, no-cost event that will serve as an AWESOME educational base for anyone interested in newborn screening advocacy for leukodystrophies. Learn everything you want to know about Leukodystrophy NBS and more!
This two-part LDNBS Bootcamp is out! If you want to watch the Part 1 focusing on NBS in the United States specifically or Part 2 related to how to best advocate for NBS and speaking with decision makers both are available at the LDNBS youtube or on our video resource page here.
Check out our other resources about research here!