The 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 newborn screening infrastructure in the United States and the second will cover all things advocacy. Let us know if you have any specific topics you want to hear more about by emailing firstname.lastname@example.org!
Register at the Zoom link on this page under “Website.”
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!