Patients and Families
Due to the rarity of FOP, many medical personnel are not familiar with nor know how to treat someone with the condition. The IFOPA has provided access to this information to help empower individuals in their role as advocates for their medical needs.
We encourage you to explore the following resources:
Emergency Medical Information
(Including Medical Contacts) to be shared with Medical Professionals
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Current Care Considerations and Treatment Guidelines
are available for patients and physicians and can also be sent to patients on an emergency USB Flash Drive.
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Clinical Studies and Trials Information
including webinars about research initiatives and the drug development process.
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Advocating in a Medical Setting
resources and information to help empower you as an active participant in your medical management.
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Support Guidebooks
are written specifically for families to address any questions regarding life with FOP
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