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Leukodystrophy Newborn Screening Action Network

Leukodystrophy Newborn Screening Action Network


Leukodystrophy Newborn Screening Action Network's financial review

Employees

1


Leukodystrophy Newborn Screening Action Network information

The Leukodystrophy Newborn Screening Action Network is dedicated to:* Advancing Newborn Screening for leukodystrophies and lysosomal storage disorders by building relationships with stakeholders, increasing awareness, and educating parent advocates;*Supporting newly-diagnosed families by acknowledging the trauma of diagnosis and working to improve the current psychosocial support system for the fu...
The Leukodystrophy Newborn Screening Action Network is dedicated to:* Advancing Newborn Screening for leukodystrophies and lysosomal storage disorders by building relationships with stakeholders, increasing awareness, and educating parent advocates;*Supporting newly-diagnosed families by acknowledging the trauma of diagnosis and working to improve the current psychosocial support system for the future;*Encouraging collaboration, coordinating efforts, and removing barriers between industry, advocacy groups, and parent advocates to ensure that families have access to the best unbiased, accurate information about clinical trials and available treatments for their child.

Leukodystrophy Newborn Screening Action Network industries

Newborn screening
Advocacy
Policy change
Family support

Leukodystrophy Newborn Screening Action Network's financial review

Employees

1

Employees

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