ALD Family Survey

First

Last

Address

Phone Number

If you’re submitting information for more than one child affected by ALD, please fill out for each:

Name of child diagnosed with ALD:

Birthdate

Gender

Based on sex chromosomes

Male

Female

Relationship to You

2nd name of child diagnosed with ALD:

Birthdate

Gender

Based on sex chromosomes

Male

Female

Relationship to You

Questions to help better understand your diagnosis

How was your child diagnosed with ALD?

Select one or more:

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

State/Region in Which You Currently Reside

Would you like to be contacted by an ALD Alliance Ambassador?

An ALD Alliance Ambassador is another parent that is currently caring for a child diagnosed with ALD and is knowledgeable about the disease

Yes

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 did you learn about the ALD parent’s guide?