Empowering Patient Advocates

Empowering Patient Advocates

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If you’re one of the incredible advocates who has already been hard at work advancing NBS, we want to support and learn from you!

You paved the way for—and perhaps already accomplished—significant change in your state.  There may be others ready to join.  Since we know how much time and energy you have put into this cause, we’d love to hear about your experiences. Contact us here so we can share your knowledge with the rest of the world.

 

Here’s how you can help us help others:

  • Share lessons learned: Because each state is so different, it would be helpful to know what you’ve encountered in your state, and/or tips to navigate the process in your state. 
  • Provide current progress for leukodystrophies in your state: Has a law been passed for ALD, Krabbe, etc? Have you spoken to the state NBS advisory board? Let us know how things are going!
  • Fill data gaps: Are we missing any pertinent info? Can you think of anything else we should provide for advocates?
  • Share resources: Have you written a book about your child’s leukodystrophy? Made a documentary? Let us know! We’d love to help spread the word!

 

In addition, please let us know how we can help you in your efforts:

  • We can connect you with others in your state.
  • We can provide research, information, and data that could be useful. For example, we spent many hours researching how to add conditions in each state (among other things) and found some surprising information that may be of assistance and may make your work easier. For instance, did you know that most states don’t require legislation for this? Legislation can take years and multiple attempts, and it’s not usually necessary anyway! Knowing this makes a huge difference, especially in time! 
  • We can share your knowledge and experiences with other advocates so that we can learn from one another.

We’re all in this together!

Join the leukodystrophy Newborn Screening Action Network

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.

  • Would you like to tell your loved one’s diagnosis story?
  • Are you interested in working together with passionate and dedicated leukodystrophy parents, doctors and scientists?
  • Would you like to help change laws and save lives?
  • Would you like to share your newborn screening story?

We want you!

Sign up and learn more!

Learn more about Newborn Screening at:

Note: Typically, it takes many years and millions of dollars to achieve these three key pillars of newborn screening. For example, it has taken 30 years for cystic fibrosis to be included in all 50 states and the District of Columbia’s newborn screening panels. Lobbying for newborn screening is challenging.

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