Becoming a member is completely FREE and comes with these added benefits:
- Be part of a growing network of global advocates
- Easily forge connections with others working towards the same goals
- Get a special gift bag from the LDNBS Action Network with:
- Limited-edition LDNBS Action Network swag items
- Special thank you tokens for joining
We would be honored to have you join our growing, global network of advocates working for progress in newborn screening.
All you have to do is fill out this brief application form below. We want to get to know you better and hear about your interest in leukodystrophy newborn screening. We welcome advocates from all levels of experience – from those who are just starting out to those who have been in this space for decades. We want to hear from you! Signing up lets us know that there are interested advocates in your region so we can call on you for help when the time comes.
Join the LDNBS Action Network today by signing up below:
One of the first steps towards becoming a successful advocate is to become informed. Already, you know how leukodystrophy personally affects your life and the lives of your loved ones. We have helpful tips on how to narrate your story if you’re not sure where to begin. The next step is to research more about the disease, and how newborn screening is implemented in your region. Find out more about newborn screening in each U.S. state here. Additionally, these three pillars of newborn screening: 1) Know Your Disease, 2) Know Your State, and 3) Know Your Story will help guide the research process.
The next step will be to gather support. This includes the support of your dear friends and family, but may also encompass the assistance of experts in the legislative, scientific, and medical communities. For example, some states in addition to having a Newborn Screening Advisory Board might also have a Rare Disease Advisory Board. Befriending the experts on the Rare Disease Advisory Board will make the process of adding your disease to the newborn screening panel go smoother. In terms of gathering support of your fellow community members, it might be helpful to go online. If possible, find like-minded advocates and share the work you’ve done to garner support. This network may be helpful when the time comes to reach out to decision-makers and influence the passage of a bill, for example.
Finally, it is time for action! Once you’re informed and you have a support network, you have a substantive platform to enact change. This support network will widen as you work to get your leukodystrophy added to the state’s newborn screening panel. And you don’t need to know everything under the sun, like how the chemical reaction plays out in the screening test, but pay attention to key details. Our three pillars of newborn screening may serve as a guideline. Also, research past examples from what other states have done as a reference. Generally, the more you know, the better. And remember, we are here to help. Good luck!