FOP for Medical Professionals
The International Clinical Council for FOP was established in 2017 to create a global voice for the best practice in clinical care and research for people who are living with FOP.
The ICC is an autonomous and independent group of 21 internationally recognised clinician experts from 14 different nations, including the UK.
Their Story
In June 2017, the International Clinical Council (ICC) on Fibrodysplasia Ossificans Progressiva FOP was established to help consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The ICC is an autonomous and independent group of 21 internationally-recognized clinician experts in FOP from 14 nations (Argentina, Australia, Brazil, Canada, China, France, Germany, Italy, Japan, Netherlands, South Africa, South Korea, United Kingdom, and United States) and six continents (Africa, Asia, Australia, Europe, North America and South America).
“During the past 25 years, the Fibrodysplasia Ossificans Progressiva (FOP) community has moved from the wastelands of a rare disease to the watershed of clinical trials. Together, we identified the genetic cause of FOP and used that knowledge to spearhead worldwide research efforts to develop therapies that will transform the care of individuals with FOP. We have expanded the frontiers of discovery and drug development, dismantled the physical and perceptual barriers that have impeded progress, and inspired global research in small molecules, antibodies, and gene therapy for FOP. We have formulated best practices and assembled teams of experts to optimize ambulatory and in-patient care of the FOP patient.”
Taken from the ICC’s website: www.iccfop.org
We are grateful for the continued support and commitment these experts give to our FOP community.
For more information about the Council, visit their website: www.iccfop.org
The Medical Management of Fibrodysplasia Ossification Progressiva: Current treatment considerations
This document provides a complete overview and introduction to FOP.
All healthcare professionals with responsibility for a patient with FOP should familiarise themselves with this document and refer to it prior to carrying out any interventions.
Diagnosing FOP
People with FOP appear as normal from birth, except for the characteristic malformation of the big toes. The toes may be shortened, turned in, or missing altogether. They are frequently misdiagnosed as hallux valgus.
In addition to the classic toes, patients with FOP usually develop unusual and unexplained, tumour-like swellings across their body. These swellings are often misdiagnosed and medical interventions can cause significant harm to the patient.
There have been incidents where parents of children with undiagnosed FOP have been accused of child abuse due to the unexplained lumps on their child’s body.
Resources to aid diagnosis:
Let Their Feet Lead the Way: Tools for Early Identification of FOP
A peer-group panel discussion on FOP, led by Professor Richard Keen, RNOH, ICC
FOP: Recognition, Treatment and Hope
An independent educational program. There are tools to guide medical professionals through simple steps on how to make an early diagnosis. A video module, presented by Dr. Genevieve Baujat (ICC) and Professor Chris Scott (ICC), provides practical advice on when to suspect and how to diagnose.