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Children and Teen Free Resources
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The following resources are available free of charge to families with affected children and/or teens thanks to the generous support of the American Legion Child Welfare Foundation. Order your free copy by clicking the link to the order form below. Those outside the U.S. and Canada may purchase these resources for a nominal cost through the NMF Store.
The National Marfan Foundation is proud to announce the availability of Marfan Syndrome A – Z Marfan Syndrome A - Z features: - 34 pages of vivid illustrations of diverse children and families in real-life situations, normalizing the child’s experience with Marfan syndrome.
- A specialized illustration style that lets children complete coloring in the pictures, plus more coloring pages available online.
- Hidden pictures on each page children can have fun finding.
- A glossary of helpful terms for parents and children.
Marfan Syndrome A – Z was written collaboratively by a committee consisting of parents of affected children, an affected adult, an elementary school teacher, a genetic counselor, social workers, and NMF staff members. The illustrations were created by Lori Mitchell, award winning author and illustrator of Different Just like Me, which was featured on “Oprah!” HOW TO ORDER Families with Affected Children: (U.S. and Canada ONLY) Families with affected children may receive the book for FREE by completing our brief online survey. All information will be kept confidential, as outlined in our privacy policy. Click here to complete the survey and order form (please, affected families only). Special thanks to the American Legion Child Welfare Foundation for making this possible. All Others:You may purchase the book from the online NMF Store. Healthcare workers, school nurses, teachers, etc.: Do you interact with families with Marfan syndrome? The NMF will provide promotional postcards to anyone who would like to provide their clients, students, etc. with information on how to get their free copy of the book directly from us. Please email the NMF Director of Education and Public Awareness Programs at programs@marfan.org. Briefly state the nature of your request and how you will use the postcards, and approximately how many postcards you need. Please be sure to provide your complete mailing address. Quick Links:
To learn more about Lori Mitchell, illustrator, click here.
To download coloring pages, click here.
To request your free copy of the book, click here (affected families only)
To order the book from our NMF Store, click here.
To request promotional postcards, email programs@marfan.org. This book was made possible by a generous grant from the American Legion Child Welfare Foundation.
Marfan Syndrome: A Guide for Teens This comprehensive resource for teens addresses all aspects of living with Marfan syndrome from diagnosis and treatment to psychosocial issues such as family and school issues. It includes a glossary of Marfan-related terms and additional resources, and features photographs of teens living successfully with Marfan syndrome. HOW TO ORDER Families with Affected Teens: (U.S. and Canada ONLY) Families with affected teens may receive the book for FREE by completing our brief online order form. All information will be kept confidential, as outlined in our privacy policy. Click here to complete the survey and order form (please, affected families only). Special thanks to the American Legion Child Welfare Foundation for making this possible. All Others: You may purchase the book from the online NMF Store. The cost of the book is $5.00. (A $10.00 S&H fee will be charged for all shipments outside of the U.S. and Canada) Healthcare workers, school nurses, teachers, etc.: Do you interact with families with Marfan syndrome? The NMF will provide promotional postcards to anyone who would like to provide their clients, students, etc. with information on how to get their free copy of the book directly from us. Please email the NMF Director of Education and Public Awareness Programs at programs@marfan.org. Briefly state the nature of your request and how you will use the postcards, and approximately how many postcards you need. Please be sure to provide your complete mailing address.
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