In 2021, we started the Landscape Project. Our goal is to compile a comprehensive list of locations of patients, leukodystrophy centers, and physicians in the ALD community. It is essential that we understand where patients are being diagnosed and who is taking care of them to ensure that all ALD patients and families receive quality care. We want to gather patient and family perspectives to better understand resources that the ALD community needs. We are currently interviewing ALD newborn screening families and will expand to all patient populations in the upcoming months. You can help by sharing your story.
Please email [email protected] for more information or fill out the survey by following clicking here.
Where do ALD patients and families live?
How can we improve the notification process of a postivie newborn screening result?
Who are the providers that are caring for ALD patients?
What resources would be most helpful for families of newly diagnosed patients?
We are grateful to bluebird bio, Inc. for supporting this important effort.
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