In the leukodystrophy space, we are seeing an increased amount of collaboration in Newborn Screening advocacy and we will...
Rapid Whole Genome Sequencing may be the future for Newborn Screening, and Rady Children’s Institute for Genomic Medicine...
If you’re just starting your Newborn Screening advocacy journey, one of the most incredible resources available to you is...
Have you encountered opposition when advocating for Krabbe Disease to be added to your state’s Newborn Screening panel? Krabbe...
On October 15, 2017, Axel became a loving addition to Colby and Lexi’s family of four. He was a happy...
The Leukodystrophy Newborn Screening (LDNBS) Action Network is working with the EveryLife Foundation for Rare Diseases to host a...
The governor of Georgia, Brian Kemp, recently signed important Newborn Screening legislation. This legislation brings Georgia up-to-date with federal...
We are proud to present a special data resource for leukodystrophy newborn screening advocates. One of our major projects...
It took seven years, four pieces of legislation (two of which were signed into law) from two different legislators,...
The LDNBS Action Network is excited to present our welcome video! Watch our welcome video below to learn more...
Starting in 2021, as part of the ScreenPlus newborn screening pilot program, parents at select New York state hospitals...
On Friday, October 9, 2020, Fundación Lautaro Te Necesita introduced a law to the Buenos Aires Legislature requesting to...
The Virginia Newborn Screening Advisory Board voted against adding Krabbe to the Commonwealth’s panel of conditions in November 2020....
Major progress for Pennsylvania newborn screening was made this fall as Governor Tom Wolf signed SB983 into law on November...
It’s important to learn as much as you can about the disease. How often does it occur in the...
Support Group Online support group for newborn screening families We will provide emotional and psychological support for...
Dr. Al Freedman, Family Support Coach Through this service, newly diagnosed families from newborn screening will be able to...
