PATIENTS
All below mentioned resources are provided by FOP Africa, the patient advocacy group for Africa.
Caring for a child with Fibrodysplasia Ossificans Progressiva (FOP) can feel overwhelming, especially when reliable, practical guidance is hard to find.
To support families navigating this journey, we’ve developed two accessible, family-friendly booklets designed to offer clear, compassionate guidance at home and in everyday environments. ​
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Caring for Your Child with FOP provides essential insights into daily care, helping you make informed decisions with confidence, while A Simple Guide to Supporting Your Child with FOP at School equips parents, caregivers, and educators with the tools needed to create a safe, inclusive learning experience.
Together, these resources aim to ease uncertainty, empower families, and support children with FOP to thrive in both home and school settings.
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Click to download:​​​​​​​​​
CLINICAL TRIALS
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The importance of clinical trials in Fibrodysplasia Ossificans Progressiva (FOP), as highlighted by Dr Chris Scott, cannot be overstated.
In the absence of widely available, approved treatments, clinical trials represent a critical pathway toward slowing disease progression, improving quality of life, and ultimately finding a cure.
Dr Scott emphasises that because FOP is ultra-rare, every trial is invaluable, not only in testing potential therapies but in deepening global understanding of the condition itself. Participation, where appropriate, helps build the evidence needed to advance care, while also offering patients access to emerging interventions under expert supervision.
In this way, clinical trials are not only a beacon of hope for affected families, but a vital engine driving progress in the FOP community.
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MEDICAL EMERGENCIES
In a medical emergency, clear and accurate information can make all the difference.
This emergency card has been designed to help patients quickly communicate essential details about their condition, treatment considerations, and specific care needs to healthcare professionals.
We encourage you to download the emergency card and medical card, complete it with your personal medical information, and keep it with you at all times, whether in your wallet, bag, or on your phone.
Having this information readily available can support faster, safer, and more informed decision-making when it matters most
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Click to download:​​​​​​​​​
