Dialogues about FOP: What Patients Wish More Doctors Knew to Enhance Early Recognition and Management

Target Audience
The educational design of this activity addresses the needs of the primary audience of PCPs, pediatricians, dermatologists, endocrinologists, occupational therapists, oncologists, general practice NPs and PAs, specialist NPs and PAs, and the secondary audience of orthopedists, bone specialists, rheumatologists, pediatric rheumatologists, genetic counselors, and dentists.

Statement of Need/Program Overview
Fibrodysplasia ossificans progressiva (FOP) causes abnormal bone formation in muscles and soft tissues in episodic “flare-ups” that lead to heterotopic ossification (HO), or replacement of muscle with bone. Ectopic bone formation leads inevitably to severe disability and early death. Because the disease is rare and many clinicians are unfamiliar with its presentation, diagnosis is often missed or delayed by many years. Yet early recognition is crucial to preventing trauma and avoiding medical and surgical interventions that trigger flare-ups and worsen patients’ disability and quality of life. Primary care clinicians have a crucial role in recognizing the condition early and helping patients to avoid triggers.

Join a panel of expert clinicians, a patient with FOP and/or their caregiver, and a representative from the International FOP Association (IFOPA) for an interactive dialogue. Panelists will share their experiences with FOP to help clinicians better recognize its hallmark signs and symptoms, make an early and accurate diagnosis, provide appropriate referrals, and offer the most current standard of care.

Educational Objectives
After completing this activity, the participant should be better able to:

Recognize early hallmark signs and symptoms that may be conducive to a diagnosis of FOP
Develop strategies to work with patients and caregivers to reduce risk of trauma and recognize flare ups early to initiate the recommended management plan