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ALD Family Survey

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.

Thank you for sharing with us.

First

Last

Address

Phone Number

Email

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 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?

Please check all that apply:

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?

Choose one:

Web search Social media Medical provider News outlet ALD Alliance Website

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The content on this website has been reviewed and approved by our Board-Certified Clinician Members on the Board of Directors at ALD Alliance, all of whom are experts in ALD.

Jaap-Jan Boelens, MD, PhD

Gerald Raymond, MD

Molly Regelmann, MD

Eric Mallack, MD

We’re building a community.

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ALD Family Survey

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