Resources

A collection of  guides, tools, and resources specifically, and independently, designed for clinicians and patients, with the goal of fostering improved outcomes in FOP.

Infographics

FOPRecognition and Diagnosis

Interdisciplinary CarePrinciples for FOP

Guide to Standard-of-CareManagement in FOP

Practical Considerations and Counseling for Standard-of-CareFOP Treatment

Understanding Disease Background and Hallmark Symptoms of Fibrodysplasia Ossificans Progressiva

Prevent the Consequences of Incorrect or Delayed Diagnosis of Fibrodysplasia Ossificans Progressiva

Appropriate Clinical Management to Improve Outcomes for Patients with Fibrodysplasia Ossificans Progressiva

Practice Resources

Usable tools to enhance your practice.

July 2026: Suggested Readings

FOP Guidelines

FOP Centers of Excellence

Suggested Readings

Frequently asked questions

Patient Advocacy

International Fibrodysplasia Ossificans Progressiva Association (IFOPA)

International Clinical Council on Fibrodysplasia Ossificans Progressiva

Canadian FOP Network

Support Groups

Patient Education

MedlinePlus Genetics

National Organization for Rare Disorders (NORD)

Genetics and Rare Diseases Information Center (GARD)