Support guides and useful reading
What is FOP? A Guidebook for Families
For anyone new to FOP, the best place to start is What is FOP? A Guidebook for Families first published in 1995 in conjunction with the Second International Symposium on FOP.
This third edition is a comprehensive look at FOP, answering many questions commonly asked of families and medical professionals. The guidebook contains information by Dr. Fred Kaplan and others regarding research and treatment options, It also has articles by parents of children who are living with FOP; and adults with FOP offer their insights into the condition too.
It is easy to read, and can be dipped into whenever the reader has a question or concern.
Supporting a child with FOP: a practical guide to their learning journey
This book is an essential and informative guide for anyone supporting a child with FOP. It details FOP in a reader friendly manner, while providing invaluable advice.
It covers advocating for the child, medical considerations, family support and practical tips – from helping parents at the very beginning of their child’s learning journey to providing useful age-appropriate insights and considerations as the child ages. We hope the guide will provide information, support, and encouragement to enable our children with FOP to enjoy learning and achieve their potential.
To receive a printed copy of this book, please get in touch.
Supporting a child with FOP – a practical guide to their learning journey
Apoiando uma criança com FOP: Um guia prático para auxílio na jornada escolar
We are thrilled to launch our first collaboration with FOP Brasil!
Helen has worked alongside Kryscia Napoli, mum to Vitor who lives with FOP, and Dr Patricia Delai to revise and update the school guide for 2024. It also has specific advice and guidance for children and young people in Brazil.
Helen trabalhou com Kryscia Napoli, mãe de Vitor, que vive com FOP, e com a Dra. Patricia Delai para revisar e atualizar o guia para 2024. Ele também contém conselhos e orientações específicos para crianças e jovens no Brasil.
O guia aborda a defesa da criança, considerações médicas, apoio familiar e dicas práticas – desde ajudar os pais no início da jornada de aprendizagem de seus filhos até fornecer insights e considerações úteis apropriados para a idade à medida que a criança envelhece e se move pelo sistema escolar. Esperamos que o guia forneça informações, apoio e incentivo para permitir que nossas crianças com FOP gostem de aprender e atinjam seu potencial.
Obrigado às crianças e aos jovens que aparecem no guia.
Para receber um exemplar impresso deste livro, entre em contato com a FOP Brasil: Email
Você pode baixar o guia aqui: Apoiando uma criança com FOP
Você pode ler o guia online aqui: Flipbook
Para baixar os Perfis de uma página, clique aqui: Perfis de uma página
Para fazer o download do pôster do FOP Warrior, clique aqui: Brilho
Gostaríamos de agradecer especialmente a Jack Fegan, que nos deu permissão para usar sua incrível imagem na contracapa. Você pode acompanhar Jack e seu trabalho aqui: Jack’s Wildlife Australia
What is FOP? Questions and Answers for the Children
This guidebook was written by Marilyn Hair, who is mum to Sarah Steele who had FOP. Sadly, Sarah passed away in 2017.
The book is aimed at children aged 7 -14, who either have FOP or perhaps have a sibling or close friend living with the condition. It is written in easy to understand English and is illustrated by children who have FOP.
It is hoped that the book will answer some of the many questions children may have about their condition as they begin to adjust to living with the mysterious condition that is FOP.
ICC Medical Guidelines for FOP
These guidelines are essential every person with FOP.
People with FOP and their carers such ensure that any medical professional responsible for their care, should be familiar with these guidelines before carrying out any procedures.
Avery by Marta Altes
A simple picture story book, which was produced as part of a project by the University of Cambridge and imagine-id.
It tells the story of a little bird who is like other birds most of the time, but sometimes feels a bit different. The story is beautifully illustrated and suitable for young children.
The book can be purchased from imagine-id or contact FOP Friends.
Click on the book to read the story in Vimeo.
The Indigo Stork
The Indigo Stork is a lovely book from Pfizer. What is normal? What things do we call rare? What is the difference between unique and special?
These questions are raised for us in “The Indigo Stork”, a story about the value of difference and the importance of putting oneself in someone else’s place. This tale of Vehia and her sister Naila, who has a rare disease, shows us the importance of valuing and caring for the “indigo storks” that exist in each and every one of us.
