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.
Social impact of COVID-19 pandemic felt among people with FOP
Since the start of the COVID-19 pandemic, individuals with fibrodysplasia ossificans progressiva (FOP) have reported decreased satisfaction with their social activities, declining mental health, and a reduction in dental visits, US research shows.
Researchers identify potential FOP biomarkers
US researchers have identified three plasma-soluble biomarkers that may reflect acute and chronic inflammatory states in people with fibrodysplasia ossificans progressiva (FOP).
Senolytics may have a role to play in FOP treatment
Drugs that selectively induce apoptosis of senescent cells may be effective candidates for the treatment of fibrodysplasia ossificans progressiva (FOP) flare-ups via the inhibition of tissue reprogramming and subsequent prevention of endochondral heterotopic ossification (HO), preclinical study findings indicate.
ASBMR 2020: Garetosmab and palovarotene show promise in FOP
Results of two trials presented at the ASBMR 2020 Annual Meeting Virtual Event show promising new options for the treatment of fibrodysplasia ossificans progressiva (FOP).
ASBMR 2020: Misdiagnosis common in fibrodysplasia ossificans progressiva
Patients with fibrodysplasia ossificans progressiva (FOP) wait an average of 1.5 years to receive a correct diagnosis, with more than half initially misdiagnosed, show data from the international FOP registry.