Extraordinary!
About the Book
The Creators
Reviews
Where to Buy
Resources
Translations
Contact
Extraordinary!
About the Book
The Creators
Reviews
Where to Buy
Resources
Translations
Contact
More
  • About the Book
  • The Creators
  • Reviews
  • Where to Buy
  • Resources
  • Translations
  • Contact

  • About the Book
  • The Creators
  • Reviews
  • Where to Buy
  • Resources
  • Translations
  • Contact

Resources for Parents

Courageous Parents Network

Exceptional Parent (EP) Magazine

Exceptional Parent (EP) Magazine

Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. 

courageousparentsnetwork.org

Exceptional Parent (EP) Magazine

Exceptional Parent (EP) Magazine

Exceptional Parent (EP) Magazine

Award-winning publication serving the special needs community. 

epmagazine.com

Child Neurology Foundation

Exceptional Parent (EP) Magazine

Child Neurology Foundation

Helping children and their families living with a neurologic condition receive the best quality of care by providing information, education, and one-on-one support when it’s needed most.

childneurologyfoundation.org

Sibling Support

Sibling Support

Child Neurology Foundation

Dedicated to recognizing, promoting and addressing the life-long and ever-changing concerns of millions of siblings of people with developmental, health, and mental health concerns.

siblingsupport.org

Global Genes

Sibling Support

Global Genes

Five rare disease toolkits every patient and parent should read.

globalgenes.org

About Face

Sibling Support

Global Genes

Our mission is to promote and enhance the emotional and mental well-being of individuals with facial differences and their families.

aboutface.ca

MyFace

Once Upon a Gene Podcast

Magic Foundation

A non-profit organization dedicated to changing the faces – and transforming the lives – of children and adults with facial differences. 

myface.org

Magic Foundation

Once Upon a Gene Podcast

Magic Foundation

 The MAGIC Foundation is the leading non-profit organization committed to reducing the emotional and physical impact of growth-related endocrine disorders for individuals of all ages. 

magicfoundation.org

Once Upon a Gene Podcast

Once Upon a Gene Podcast

Once Upon a Gene Podcast

 Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Featuring interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.  

Apple Podcasts

Disorder Channel

Undiagnosed Diseases Network

Once Upon a Gene Podcast

The most rare stories in the world stream to your living room TV.  The Disorder Channel is available free to the millions of homes with an Amazon Fire TV or Roku.  

thedisordercollection.com

Undiagnosed Diseases Network

Undiagnosed Diseases Network

Undiagnosed Diseases Network

A research study funded by the National Institutes of Health. Bringing together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies. 

harvard.edu

Medical Trauma Resources

Undiagnosed Diseases Network

Undiagnosed Diseases Network

Explore resources on Medical Trauma from the National Child Traumatic Stress Network (NCTSN).

nctsn.org

Six Lessons for Rare Parents

Video from Kara & Evren Ayik

© 2021-2026 Evren & Kara Ayik. All rights reserved.


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