Caring for a child with Alport syndrome comes with its own set of unique challenges. While our community is learning more about this condition through recent and ongoing scientific research, there is still much to be understood, particularly in those too young to be included in most clinical trials.
ASF has compiled the following educational resources to help parents and caregivers make informed decisions about their child’s care. We have also listed age-appropriate information that can be shared with children to help them learn about their condition and eventually take charge of their own health.
If you are a parent or caregiver and have additional resources that we should consider adding to our list, please email us at [email protected].
Information for Parents/Caregivers
ASF Resources Developed by Patients and Families:
First Pediatric Nephrology Appointment: Tips for Parents
504 Plan and IEP Basics (Options and tools to support children with chronic disease in school settings)
Pediatric Alport Insight Project and Report
Patient Guide: By Patients for Patients
Hearing Loss – Tips and Resources for Caregivers
Videos:
Pediatric Alport Patient Care: What You Need to Know Right Now
Pediatric Treatment Medications: Q&A
Navigating Alport Syndrome from the Cradle to College Q&A
Published Article on Treatment Recommendations:
Clinical practice recommendations for the diagnosis and management of Alport syndrome in children, adolescents, and young adults–an update for 2020*
By Kashtan, Clifford E. and Gross, Oliver.
Pediatric Nephrology, November 6, 2020. (Subscription-Based)
*Note: Dr. Kashtan’s layman’s summary of this Pediatric Nephrology article can be read here.
Other Helpful Resources:
AAKP’s Pediatric Kidney Pals
For Children Ages 5-8
Books:
Annie Has Alport Syndrome (Official ASF Children’s Coloring Book)
ABC’s of Alport Syndrome
By Kayla Knapp
It’s Me! As Good As I Can Be
By Susan Price, illustrated by Jennifer Maravillas
Contact [email protected] for ordering details
Extraordinary! A Book for Children with Rare Diseases
By Evren and Kara Ayik, illustrated by Ian Dale
Howl Learns about Kidneys and Dialysis
By Brenda E. Cortez
For Children Ages 9-12
Books:
Annie Has Alport Syndrome (Official ASF Children’s Coloring Book)
Extraordinary! A Book for Children with Rare Diseases
By Evren and Kara Ayik, illustrated by Ian Dale
No Excuses: Growing Up Deaf and Achieving My Super Bowl Dreams
By Derrick Coleman, Jr. and Marcus Brotherton
For Children Ages 13-17
ASF Resources Developed by Patients and Families:
Pediatric Alport Insight Project and Report
Top 5 Things for Teens to Know About Alport Syndrome
Hearing Loss – Tips and Resources for Teens
Podcasts featuring teen/young adult Alport syndrome patients:
On Air Advocate: Alport Syndrome – A Teen and Young Adult Perspective
Websites:
Top 5 Things for Teens to Know About Alport Syndrome
Transitioning to Adult Care
Videos:
Ask the Experts Series: Transitioning from Pediatric to Adult Care
