Some states require a law, but most rely on their advisory boards/DOH to make the decisions and legislative action is not necessary.
Many states have an advisory Board that chooses which diseases should be added to the Board. In these cases, it may be wise to approach them instead of a legislator.
A dedicated group of legislators who are focused on expanding care for rare diseases within their state. They are excellent candidates when choosing someone to introduce legislation.
Groups like these often contain medical experts as well as those who are aware of how your state operates/how to have a disease added. This is something the National Organization for Rare Disorders (NORD) (http://www.rarediseases.org) has recommended for each state to form. It’s a great place to start!
The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening for leukodystrophies and lysosomal storage disorders.
We do not believe in wasting time and resources by starting from scratch with each new disorder. Instead, we want to build partnerships across the dozens of leukodystrophy groups so we can work together, coordinate our efforts, share resources and information and advance the goal of newborn screening for our entire family of disorders around the world.
Want to add leukodystrophy to your States Panel?
If you’re wanting to have a leukodystrophy added to your state’s newborn screening (NBS) panel but aren’t sure where to begin, we’d like to help! These three pillars of newborn screening advocacy: 1) Know Your Disease, 2) Know Your State, and 3) Know Your Story will help guide the process. It can seem intimidating at first, especially because things vary from state to state. We’ve compiled some data to help you determine the best course of action for your particular state, and we’re here to help if you have additional questions!