FOP and School
FOP doesn’t affect the person’s intelligence or cognitive abilities. However, living with an ultra-rare condition such as FOP does bring challenges most people can never imagine, and considerations do need to be taken into account to ensure the best school experience possible. Young people with FOP leave high school with a number of qualifications, and many people with FOP go on to have rewarding and fulfilling careers.
As a teacher it can be understandably frightening and overwhelming to be informed there will be a child with FOP in your class. In order to support teachers and educational practitioners, we published the book ‘Supporting a Child with FOP: a practical guide to their learning journey’. The book was written by two experienced teachers, to offer clear information and advice. There is also space in the back of the book to personalise it to meet the specific needs of the child, and to record any adaptations or information that is personal to that child. It can then serve as an ongoing guide and passed through the school as the child moves through the years.
FOP Friends is happy to speak with any educational setting to answer questions or provide further advice or guidelines to ensure the child with FOP reaches their potential and is able to access the same high-quality educational experiences as their peers.
Emergency Medical Information
Click the image to download an editable copy of the Emergency Medical Information poster, as shown in Appendix 4.
Same but different: a look at life with FOP
The IFOPA has produced a short video, which is ideal to share with classes, that explains a little bit about FOP. It is also useful to share with all classes to highlight the importance of accepting everyone and celebrating differences.
Kids: SEND in Education
This website offers clear, stage-by-stage guidance for families, covering nursery, primary, secondary, and post-16, so that children and young people with special educational needs and disabilities can access the right support to thrive, learn, and grow. It explains crucial frameworks, including Education, Health and Care Plans (EHCPs), the SEND Code of Practice, and the Local Offer, to empower families with knowledge and confidence. There are also h thoughtful questions for parents and carers for each educational setting, helping them advocate for environments where their child can truly belong and flourish.
Primary School
The Witherslack Group
This organisation supports parents and carers by offering free, expert guidance and a welcoming community as they navigate the world of special educational needs (SEN), underpinned by their reputation as the UK’s leading SEN education provider. Their integrated approach of combining education, therapeutic care, and tailored Futures support ensures children and young people flourish academically, emotionally, and socially.
Visit: Resources for Parents
Special Needs Jungle: Applying for an Education, Health, and Care Plan (EHCP)
Special Needs Jungle, is a parent-led website that provides resources and informed opinions about children and young people who have additional needs. Their website offers a wealth of specialist advice covering most aspects of the special needs process.
They have produced, in conjunction with the Department for Education, a series of flowcharts to help parents and carers navigate the complex process of gaining an EHCP for their child with FOP. Click on the image to download the charts.
Special Needs Jungle
CamRare
The Unique Feet Education page on the Cambridge Rare Disease Network (CamRARE) website is a helpful resource for families and educators supporting children living with any rare condition. It offers practical guidance designed to help these pupils flourish both academically and socially, emphasising the importance of equal opportunities and personalised support. The page also highlights the collaborative spirit of the Unique Feet community in fostering a supportive and nurturing educational environment.
IPSEA: Independent Parental Special Education Advice
“IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND).
By law, children with SEND are entitled to educational support that meets their individual needs. Since IPSEA was formed in 1983, they have helped to improve educational support for thousands of children with all kinds of SEND. They do this by providing free and independent legally-based information, advice and casework support.”
IPSEA has a suite of free downloadable guides, resources and template letters available to parents and carers.
Cerebra: Education in England and Education in Wales guides
Cerebra is a charity which support children with brain disorders. However, they have produced some excellent resources for parents and carers to offer advice and guidance, and want to know how to get help for their child at school.
These guides are free to download from their website.
Cerebra: Education in England
Cerebra: Education in Wales
EHCP Fact Sheet
A simple overview of the EHCP form and what should be included in each session.
Download here: Sunshine Support Fact Sheet
EHC Needs Assessment (EHCNA) Timeline
A simple overview of the timeline from request to plan or appeal.
Download here: Sunshine Support EHCNA Timeline Fact Sheet
