Downloadable resources for patients, families and friends
Here to help…
When Chris and Helen received the diagnosis in 2009 that their son had FOP, the surgeon gave them those three fateful words ‘fibrodysplasia ossificans progressiva’ on a torn-off piece of paper and sent them on their way. The only advice they were given was, so long as Oliver didn’t play rugby, he’d pretty much be ok. They had no idea of what lay ahead of them. Fast forward to 2024 and they, along with the other trustees, want to make sure no other parents have to go through what they did.
At FOP Friends, we truly understand from first-hand experiences, how it feels to be given that diagnosis. And while we cannot do anything to change that news, we do hope that we are able to provide families with trusted information, in one place, so that families can find answers to their questions in their own time and in their own way. We hope these leaflets will go some way to helping families through the first weeks and months.
These resources are free to download, to support people with FOP, their families, health professionals and other people who are interested in learning more about FOP. If you would like to receive all the files as a Zip file, please use the Contact Us form to request it.
This information is based on what we are regularly asked for as a charity; what other families say they wish they’d been given when they received their diagnosis many years ago; and what Chris and Helen wished they’d had to support them in those dark, early days, when they were told their baby had FOP.
If there are any questions left unanswered, please just reach out and ask. We are stronger together.
What we do…
FOP Friends is the UK’s only charity which is dedicated to supporting families who are living with FOP. We help families and patients living with FOP; fundraise to support the research into a treatment and a cure; and raise awareness of FOP to hopefully prevent misdiagnosis….to name but three.
We work with the UK’s FOP medical specialists, with other patient organisations, and pharmaceutical companies, to achieve our aim.
We receive no government or NHS funding and rely solely on the generosity of our fundraisers and from grants we secure. If you think you might be able to help us carry out our work, please do get in touch.
FOP: the essential facts
A leaflet which explains the key facts about FOP. Useful for those just learning about the condition, or to share with friends and family. Also includes a QR code which links to the ICC’s (International Clinical Council for FOP) Medical Guidelines for FOP.
Quick Links to Essential Information
Five QR codes with links to the most important information, everyone living with FOP needs to be able to access. Download and give to carers and healthcare providers to assist them in learning about FOP.
Contact details for RNOH
A list of contact details for the FOP medical specialists at the Royal National Orthopaedic Hospital (RNOH), Stanmore, London, England.
Useful Contacts
Contact details for the International FOP specialists: physicians, medical professionals, anaesthetists, and dentists. If you know of any other medical professionals with experience of treating patients with FOP, who you think should be included, please do get in touch.
If any of the details are out of date, we would appreciate you letting us know so we can ensure the information is useful for al our users.
Useful Reading
When you first get the diagnosis of FOP, it is frightening, overwhelming, daunting. However, there are now a number of books available that can help you make sense of the diagnosis. The books in this are from trusted sources, and contain medically accurate information, as well as sound practical advice. These guides are designed to be picked up and dipped into, in your own time. They will be an invaluable point of reference as you navigate the challenges that FOP will present. ‘What is FOP? A Guidebook for Families’ is an excellent book, and is easy to read, and a good place to start.
Social Media groups
FOP is a rare medical condition and it is unlikely that you will have met someone with it, pre-diagnosis. You may feel completely overwhelmed after speaking with a specialist, and totally alone. However, there is a strong and supportive community which is ready to welcome you and offer you friendship and guidance, in both the early days of despair, but also as you move on and learn to live with FOP. There are many groups, with different membership criteria. If you are looking to find your silver lining, then it is likely to be in the friends you will make.
Ambulance Service Procedures
In the UK, it is possible to have a marker or flag placed on a patient’s home address (and often their school or workplace) to alert the ambulance crew that in the event of an emergency, the patient requires specialist medical treatment. All ambulance trusts have their own procedures for this process, as outlined in the leaflet.
All information was correct as of July 2020. If you find any of the information has changed, please let us know so we can update our leaflet as necessary.
Fire Service Emergency Procedures
If you have significant physical restrictions and mobility issues due to FOP, it is strongly advised that you get in touch with your local fire service to notify them of your needs. This will allow the firefighters to be fully prepared in the event of them needing to attend your property in the event of an emergency.
Click here for a list of contact details for your local fire service. https://www.nationalfirechiefs.org.uk/Fire-and-Rescue-Services
Emergency Care Poster
This poster was included in the back of the ‘Supporting a Child with FOP: a practical guide to their learning journey’ guide for schools. A completed example is shown in Appendix 4. It was created in conjunction with two FOP specialists. This links to an editable version of the poster. It is particularly useful for schools to have it laminated and displayed, for use in an emergency. There is also a QR code which links to the ICC FOP Medical Guidelines for speed of access.
What is FOP?
Infographic with facts about FOP to share with families, friends, and those wanting to learn more about the condition.
Dental Care
It is essential for patients with FOP to take extra care with their dental hygiene to reduce the need for invasive dental treatments. People with FOP are advised to see their dentist every 3 months, and to see a special care dentist. In the event of a patient with FOP requiring dental treatments, they are strongly advised to consult with a dental specialist who has knowledge and experience of FOP.
We would like to create a database of dental specialists across the UK who have knowledge of FOP. If you can recommend a dentist, please get in touch.
Five Tips for Better Dental Health
A colourful infographic to remind people with FOP of ways to take extra care of their dental health.
Finding a Cure for FOP
The research into FOP has far wider implications for many more common conditions than just FOP. Use this iceberg poster to highlight the many benefits of supporting research into a rare condition.
The ICC FOP Medical Guidelines
Download the latest guidelines for FOP patients here.
Visit the ICC website
Welcome to Holland
Written in 1987 by American author and social activist Emily Perl Kingsley, who reflected on her own experiences of having a child with a disability.
Welcome to Holland: Part 2
In response to the original poem by Emily Perl Kingsley, an anonymous parent penned their feelings about ‘living in Holland’ 10 years along their journey.
Talking FOP Guide
Ipsen UK have worked with some UK families affected by FOP, as well as FOP Friends, to develop this helpful guide. Those who have been recently diagnosed, or who perhaps may be starting a new chapter in their life, may find this guide a useful starting point. It includes tips and advice to help begin conversations with others, from family and friends to schools and employers.
Patient Experience Map
Ipsen UK worked with four people, living with FOP, as well as FOP Friends, to develop a map of their FOP experiences. They used this to create an infographic of what their patient journeys looked like, to illustrate the challenges one might face when living with a diagnosis of FOP. When you receive a diagnosis, it can be helpful to hear the experiences of others. This map may also be useful to share with those close to you, to assist them with understanding your patient or carer journey.
Our FOP Warriors
An inspirational poster for the home or classroom, with words from one of our FOP mums.
Care Passport
Many hospitals now use Care Passports to allow patients to explain any specific needs or requests they may have when staying in hospital. Whilst the passports were designed for patients with dementia and communication needs, they may also be useful to patients with FOP who have less common needs such as feeding needs, comfort needs etc.
The rational behind the passport to health scheme can be read here.
Lions ‘Message in a bottle’ Scheme
Operated by the charity Lions Club, this national scheme uses a small bottle, stored in the fridge, to enable first responders to local medical informatioon quickly in the event of an emergency. Contact your local Lions Club, or download their leaflet for further information and details of how to get a bottle.
