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Fig. 2 | Orphanet Journal of Rare Diseases

Fig. 2

From: Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective

Fig. 2

Care coordination pathway (current and future). The journey to diagnosis for patients with FOP can involve a number of different HCPs. The IFOPA and other national/global FOP organizations and initiatives also play an important role in the identification and referral of patients. Following diagnosis, patients with FOP should be supported by a primary physician who is willing to consult with FOP experts and can coordinate a local care team of specialists without expertise in FOP [12]. FOP experts from the ICC can provide guidance and education for the local physician as required. There are also a variety of CME opportunities available for all HCPs. As the global network of FOP specialists continues to expand, it is the long-term goal of the ICC to create multiple national/regional centers of FOP care. These centers would combine medical, surgical, anesthesia, physical and occupational therapy, and dental expertise in FOP in physical locations to improve care and minimize risks for patients. These centers could also function as key sites for clinical research. CME: Continuing Medical Education; FOP: fibrodysplasia ossificans progressiva; HCP: healthcare professional; ICC: International Clinical Council on FOP; IFOPA: International FOP Association

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