Journey to FOP diagnosis
This tool will guide you through some simple steps on how to make an early diagnosis, highlighting common points at which misdiagnoses can be made.
Global study maps natural history of FOP
An international, 3-year study of people with fibrodysplasia ossificans progressive (FOP) has mapped the natural history of the disease and shown that the greatest levels of progression occur during childhood and early adulthood.
International survey measures FOP burden in patients and their families
An international survey of patients with fibrodysplasia ossificans progressiva (FOP) and their families has shown that decreased joint function is associated with reduced quality of life (QoL), greater reliance on living adaptations, and economic implications.
Palovarotene warrants further investigation for HO prevention in FOP
Treatment with the retinoic acid receptor (RAR)-gamma agonist palovarotene may prevent heterotopic ossification (HO) during a fibrodysplasia ossificans progressiva (FOP) flare-up, phase 2 study data suggest.
Women’s health and FOP
Roberto Pignolo and Mona Al Mukaddam discuss the most common women’s health issues they are presented with by their FOP patients. They cover menstrual abnormalities, contraception, feminine hygiene, and the considerations for pregnancy and delivery for women with FOP.
Collaborating with FOP patients and their families
Roberto Pignolo talks to Trisha and her son Lincoln who has FOP. They discuss the challenges they faced getting a diagnosis; how, as a family unit, they have achieved a balance between protection and freedom for Lincoln; and what healthcare professionals can learn from patients and their parents or caregivers.
Novel ALK2 inhibitory compound may be a candidate FOP treatment
Swiss researchers have identified a novel compound that selectively inhibits activin receptor-like kinase 2 (ALK2) and may be a future candidate for the treatment of fibrodysplasia ossificans progressive (FOP).
Key FOP stakeholders discuss challenges and opportunities in care
A meeting of key stakeholders in the fibrodysplasia ossificans progressiva (FOP) community has highlighted the major challenges and opportunities for improvement in care pathways and patient involvement in research.
Living with FOP: Ian, Kathleen and Hassan talk to Clive Friedman
Three personal narratives that address difficulties with diagnosis and finding specialists, the importance of prevention and awareness, and day-to-day life living with an ultra-rare disease.
Managing oral and dental health
Roberto Pignolo talks to Clive Friedman about the importance of preventive oral care, considerations for dental surgery and orthodontic treatment, and how the medical and dental professions can work together to ensure better dental care for people with FOP.