One of our goals for 2021 is to compile a comprehensive list of locations of patients, leukodystrophy centers, and physicians who receive newborn screening referrals. 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 know from patients that the newborn screening workflow varies by state. We want to interview parents and guardians to obtain patient perspectives. You can help by sharing your story. Please email [email protected] for more information.
