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Newborn Screening Toolkit for Adrenoleukodystrophy

The newborn screening for adrenoleukodystrophy advocacy tool kit is an empowering and educational resource created by bluebird bio in collaboration with patient advocacy organizations and advocacy leaders to raise awareness of adrenoleukodystrophy (ALD) and the life-saving opportunity newborn screening (NBS) can provide. [Download PDF in full]

 

 

Section 1: The Importance of NBS for ALD

Hear directly from advocates, like you, in a call-to-action that offers hope and explains the importance of newborn screening for ALD.

 

Section 2: What is ALD and What is NBS?

Learn about adrenoleukodystrophy and newborn screening through an overview of the condition, its prevalence and how it may manifest in individuals, as well as through content outlining what newborn screening is and how the newborn screening test for ALD works.

 

Section 3: What is Advocacy?

Find out what it means to be an advocate and how you can take part in enacting change through an overview highlighting the core pillars of advocacy and awareness raising, as well as examples of decision makers in the newborn screening field and methods to raise awareness at a country, federal and state level.

 

Section 4: Where is NBS Today?

Discover the answers to questions relating to the current status of newborn screening around the world, as well as information related to understanding and performing cost-effectiveness analysis that can be helpful in convincing decision makers to add a disease to a newborn screening panel.

 

Section 5: How are diseases added to NBS panels in the United States, in the United Kingdom, and in select EU countries?

Learn how conditions, such as ALD, are added to newborn screening panels in the United States, the United Kingdom, and in some European countries. Using the identified countries as examples, you can begin to discover the required steps to add new diseases to a country’s NBS panels and to ask for appropriations to finance implementation of the screening.

 

Section 6: What YOU Can Do: how to get involved

Has anyone ever told you just how powerful your voice can be?

There are plenty of ways for you to get involved and make a difference. Your voice is powerful. Your story is personal. Discover the ways you can start a newborn screening advocacy campaign for ALD through examples on how to craft and share your message while connecting information to decision makers who can help you engender change.

 

Section 7: Resources

Connect for more information about adrenoleukodystrophy, newborn screening, rare diseases, advocacy and more.

Get to know resources, such as patient advocacy organizations, where you can find additional information and support in your journey to advocate for change.

 

Section 8: FAQ: Frequently asked questions

Find answers quickly through this go-to summary clarifying important concepts related to frequently asked questions about both ALD and newborn screening.

 

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