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NF Parent Guidebook

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About

A spiral notebook with a picture of a family.The NF Parent Guidebook is a home-based, 160-page resource designed to provide support and education to you and your family. It will guide you through your journey with NF and associated learning, behavioral, or social challenges. The NF Parent Guidebook is a place to find ideas, strategies, and suggestions that will help you understand and meet the needs of your family and child.

Click HERE to download a flyer to share with anyone who might be interested in the NF Parent Guidebook. (Also available in French and Spanish)

The NF Parent Guidebook is available at the links below in French, Spanish, Italian, and German, with a Mandarin translation coming soon.

Download the Guidebook

The NF Parent Guidebook is available for download at no charge.

CLICK HERE  to order a free print copy from our partners at Mele Printing.

NF Parent Guidebook

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NF Parent Guidebook (Spanish)

Download

NF Parent Guidebook (French)

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Illustrated family of five smiling, with a baby wearing "Born a Fighter" shirt. Text in Italian discusses a guide for parents on helping children with learning difficulties related to type 1 neurofibromatosis.

NF Parent Guidebook
(Italian)

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Illustration of a diverse family with three children, one in a baby carrier. Text in German discusses a guide for parents on helping children with Neurofibromatosis Type 1. Logos at the bottom.

NF Parent Guidebook (German)

Download
A family of five stands together on a cover illustration. The text is in Chinese, with logos for Alexion and the Children's Tumor Foundation.

NF Parent Guidebook (Mandarin)
Coming Soon!

Moxie & Sparx

Moxie and Sparx will be your guides as your family completes the NF Parent Guidebook. They will also lead you through some fun activities for you to engage in with your child.

Download the Moxie and Sparx Color Jam Coloring Book in English or Spanish.

Download our NF1 comic, Moxie & Sparx Explain NF1 in English, Spanish or French. 

HI, I'm Moxie!

I’m a courageous bear who wants to help you strengthen family relationships. I’m a champion for teamwork and communication. I believe that strong families are at the heart of the NF journey. I want you to remember that you are not alone – you have each other, your healthcare team, and the NF community supporting you!

HI, I'm Sparx!

I’m a clever, quick-witted fox who wants to spark your love for lifelong learning. I believe that families who take the time to learn about NF are empowered throughout the NF journey. I know that each family is different. That’s why it’s important to be creative and be patient – you’ll discover what works best for you and your family. And remember, don’t be afraid to ask questions!

Acknowledgements

The NF Parent Guidebook is the product of a multi-year CTF research grant given to Maria Acosta, MD, of the Children’s National Health System. Other contributors to the Guidebook include Beth Kaplanek, RN, BSN, and Karin Walsh, PsyD.

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