Your FOP care network

High-quality care for people living with FOP requires a coordinated approach from many different types of medical professionals.¹

The primary care physician (PCP) is usually responsible for organizing a local team of specialists who may not have expertise in FOP. They may also consult with experts from other centers when necessary.¹

Click on the specialties below to learn more about their role in the diagnosis and management of FOP.*

Emergency care
providers

Emergency care providers (ECPs)

Expanded care network

Individuals with FOP may require emergency care at some point in their lives.
Whether related to their FOP or not, it is vital that the ECPs are informed
of their patient's history to avoid regular procedures that may result
in a flare-up or heterotopic ossification.¹

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Geneticists/
genetic counselors

Geneticists/genetic counselors

Expanded care network

Geneticists can conduct tests to confirm the diagnosis of FOP. Genetic counselors may be
required for sexually active people with FOP to discuss family planning and potential risks.

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Mental health
counselors

Mental health counselors

Expanded care network

Psychological support is recommended if individuals with FOP
show signs of depression and can help with adjusting to the
limitations imposed by FOP.¹

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Dentists

Core care network

People with FOP may need regular dental appointments to manage their risk of oral
disease. The dentists should be familiar with FOP and understand how routine treatments
may trigger ankylosis of the temporomandibular joint.

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Rheumatologists

Rheumatologist

Expanded care networkDiagnosis

Some patients with FOP may be diagnosed by a rheumatologist.¹
However, in terms of disease management, rheumatologists are not involved in day-to-day
care but may be required for pharmacological treatment.²

1. Shi X et al. Medicine (Baltimore) 2020;99:e19933;

2. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Endocrinologists

Core care network

Endocrinologists assess how a patient's hormones impact their bones and help
manage overall bone health.¹
They may be involved in the diagnosis of patients with FOP.²

1. Mount Sinai. Endocrinology. Available at: https://www.mountsinai.org/care/endocrinology. Accessed Jan 2024;

2. Hsiao EC et al. Endocr Abstr 2020;70:AEP1025.

Patient/Caregiver

Patient/caregiver

The journey to diagnosis and ongoing disease management for patients with FOP can involve
a number of different healthcare professionals. A patient's local multidisciplinary care team
should be coordinated by their primary care physician; however, patients and/or caregivers
may also need to advocate for themselves in a medical setting.¹

1. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168.

Primary care
physician

Primary care physician (PCP)

Care coordinator

Once a patient is diagnosed with FOP, a local PCP should be appointed to
coordinate care between FOP experts and local non-specialists.
Communication and knowledge-sharing between pediatric and adult PCPs is also
important for a positive transition to adult care.¹

1. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168.

Orthopedists

Core care networkDiagnosis

Orthopedists and orthopedic surgeons are
often involved in the diagnosis and treatment of FOP.^1,2
They can help address patients' musculoskeletal concerns,
including scoliosis or changes to range of movement.³

1. Kannu P and Levy CE. J Peds 2021;232S:S3–S8;

2. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168;

3. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Pain and
palliative care
specialists

Pain and palliative care specialists

Expanded care network

Pain and palliative care specialists help people with FOP manage
pain associated with flare-ups and restricted movement.^1,2

1. NIH GARD Available at:
rarediseases.info.nih.gov/diseases/6445/fibrodysplasiaossificans-progressiva/living.
Accessed May 2023;

2. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Pulmonologists

Core care network

Pulmonologists help manage thoracic insufficiency syndrome (TIS), which is common in FOP.^1,2
A pulmonologist should be involved early with regular assessments, as prophylactic measures
can help decrease morbidity and mortality from TIS.¹

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127;

2. Kaplan FS et al. J Bone Joint Surg Am 2010;92:686–691.

Cardiologists

Cardiologist

Expanded care network

People with FOP may have an increased prevalence of
cardiac conduction abnormalities, which can be monitored and
managed by cardiologists.^1,2

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127;

2. Kou S et al. Orphanet J Rare Dis 2020;15:193.

Audiologists/
otolaryngologists

Audiologists/otolaryngologists

Expanded care network

People with FOP are at risk of conductive hearing loss.
Audiologists/otolaryngologists should be consulted for audiology
evaluations every other year.¹

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Occupational therapists

Expanded care network

Occupational therapists help people with FOP promote and
preserve their independence by advising on assistive devices or
adaptations to help with activities of daily living.¹

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Anesthesiologists

Expanded care network

If a patient with FOP requires surgery, the anesthesiologist should evaluate them
pre-operatively, preferably before the day of the procedure, due to risks and complexities
associated with general anesthesia in these patients.¹

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

*Note: This is not an exhaustive list. Some centers may have specialists not included here, and the expanded care network may vary due to differences in the needs of people living with FOP.

1. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168.

Your FOP care network

Emergency care providers (ECPs)

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Geneticists/genetic counselors

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Mental health counselors

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Dentists

Core care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Rheumatologist

Expanded care networkDiagnosis

1. Shi X et al. Medicine (Baltimore) 2020;99:e19933;

2. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Endocrinologists

Core care network

1. Mount Sinai. Endocrinology. Available at: https://www.mountsinai.org/care/endocrinology. Accessed Jan 2024;

2. Hsiao EC et al. Endocr Abstr 2020;70:AEP1025.

Patient/caregiver

1. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168.

Primary care physician (PCP)

Care coordinator

1. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168.

Orthopedists

Core care networkDiagnosis

1. Kannu P and Levy CE. J Peds 2021;232S:S3–S8;

2. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168;

3. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Pain and palliative care specialists

Expanded care network

1. NIH GARD Available at: rarediseases.info.nih.gov/diseases/6445/fibrodysplasiaossificans-progressiva/living. Accessed May 2023;

2. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Pulmonologists

Core care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127;

2. Kaplan FS et al. J Bone Joint Surg Am 2010;92:686–691.

Cardiologist

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127;

2. Kou S et al. Orphanet J Rare Dis 2020;15:193.

Audiologists/otolaryngologists

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Occupational therapists

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

Anesthesiologists

Expanded care network

1. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2:1–127.

1. NIH GARD Available at:
rarediseases.info.nih.gov/diseases/6445/fibrodysplasiaossificans-progressiva/living.
Accessed May 2023;