This survey is completely voluntary and should only take a few minutes to complete. It is our hope that we may help your family through this diagnosis by providing you with current information and advice from others in our community.
If you’re submitting information for more than one child affected by ALD, please fill out for each:
Gender
Male
Female
How was your child diagnosed with ALD?
Newborn screening
Another family member’s newborn screening
Another family member’s diagnosis (not through newborn screening)
Genetic test following a MRI or adrenal insufficiency test
Would you like to be contacted by an ALD Alliance Ambassador?
Yes
No
Yes, but not at this time. We will contact you in two months to check in.
What specific areas are you hoping to learn more about with regards to ALD?
How ALD is inherited
Getting other members of my family tested
Finding the right doctors for my child
Endocrinology/Addison’s Disease
Neurology
Help with organizing my son’s monitoring schedule
Preparing for my son’s first MRI
Bone Marrow Transplant
Gene Therapy
Females with ALD
Adrenomyeloneuropathy (AMN)
Options for having more children without ALD
Fundraising for ALD research and newborn screen expansion
How did you learn about the ALD parent’s guide?
Web search
Social media
Medical provider
News outlet
ALD Alliance Website
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