Enhancing Awareness and Early Care

At Newborn Screening Alliance, our dedicated efforts have notably boosted awareness and participation in newborn health testing. Our educational materials and campaigns have reached thousands, ensuring more infants receive essential early care. With strong community support and funds, we’re making a tangible difference in countless families' lives.

The Newborn Screening Alliance (NBS Alliance) is a dedicated program of the ALD Alliance, passionately committed to ensuring that every newborn receives timely screening for adrenoleukodystrophy (ALD) and other life-threatening genetic conditions. Our mission is rooted in the belief that early diagnosis can save lives, improve health outcomes, and provide families with the support and information they need during critical moments.

Founded on the principles of advocacy, education, and collaboration, the NBS Alliance works tirelessly to raise awareness about the importance of newborn screening. We strive to advance policies that support the inclusion of ALD in newborn screening panels across all states, recognizing that early detection is vital for effective intervention and treatment.

Our efforts focus on several key areas:

• Advocacy: We collaborate with healthcare professionals, policymakers, and community organizations to promote the significance of newborn screening. By leveraging research and data, we advocate for legislation that supports comprehensive screening programs nationwide.

• Education: We provide educational resources and training for healthcare providers, families, and stakeholders to ensure that everyone understands the benefits of newborn screening. Our goal is to equip families with the knowledge they need to navigate the complexities of ALD and related conditions.

• Collaboration: The NBS Alliance fosters partnerships across various sectors, including advocacy, academia, and industry, to create a unified approach to newborn screening. By connecting experts and stakeholders, we focus on harmonizing screening processes and improving long-term follow-up care for affected infants and families.

At the heart of our mission is the unwavering belief that every child deserves a healthy start. We are dedicated to expanding newborn screening programs and ensuring that no family faces the challenges of genetic disorders without the resources and support they need. Together, we can transform lives and create a future where early diagnosis leads to better health outcomes for all children.

Join us as we work to save lives through the power of early detection. With your support, we can make a lasting impact on newborn screening and the lives of families affected by ALD and other genetic conditions. Together, we can ensure that every newborn has the chance to thrive.

Elisa Seeger - Founder 
Miranda McAuliffe

Anna Grantham

Chris Porter

Michael Gelb

Dieter Matern

Michele Caggana