One of ALD Connect's goals 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 obtain patient and family perspectives to better understand resources that the ALD community needs.
We are currently surveying the following members of the ALD community:
-Parents or caretakers of children diagnosed through Newborn Screening
-Parents or caretakers of children diagnosed without Newborn Screening but still in the "monitoring phase"
-Parents or caretakers of children living with Cerebral ALD
-Parents or caretakers of children who have died from Cerebral ALD
-Adult women with ALD (With or without symptoms)
-Caretakers (past or present) of women with ALD
-Adult men with AMN/ALD (With or without symptoms)
-Caretakers (past or present) of men with AMN/ALD
If you fall into multiple categories (i.e. patient and parent), please feel free to take the survey multiple times. Please contact firstname.lastname@example.org
with any questions or concerns. Thank you for your help in supporting this project!