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Resource library

Information and support for caregivers

Use these helpful resources at your next appointment

Symptom Questionnaire

Download and fill out a Symptom Questionnaire to bring to your child’s appointment to help you explain what your child is experiencing.

Download questionnaire

Doctor Information Sheet

Print out a Doctor Information Sheet to give to your child’s doctor that explains the signs and symptoms of AADC Deficiency. This sheet also provides information about tests that can determine if your child has AADC Deficiency.

Download information sheet
Caregiver icon

Getting support

There are a variety of websites and support groups that can help caregivers like you find information and resources. Here are some that might be right for you:

National Organization for Rare Disorders (NORD)

Genetic and Rare Diseases Information Center (GARD)

Rare Diseases Clinical Research Network

RareConnect

Global Genes

Child Neurology Foundation (CNF)

Map

Navigating Medicaid

When you have a child with a rare disease like AADC Deficiency, healthcare costs can become a concern. Medicaid may be an option for many families.

Find out about your state’s Medicaid coverage.

Go now

View a glossary of helpful terms you may encounter