FOP has featured in a number of documentaries, awareness videos, television shows and news segments over the years.
A big thank you to everyone who shares their story, helping to raise awareness and understanding of FOP.
If you know of any video about FOP that is not listed here, please do let us know so we can add it to our library.
Click on any of the images to launch the videos. The link will take you to an external website, usually YouTube. These links have been created in good faith, however FOP Friends cannot be held responsible for external content. If you should find a broken link or have concerns about the content of any of the videos, please get in touch. Many thanks.
This Morning: Nicky and Isla
Nicky and Isla sat on the famous couch to talk about living with FOP. Nicky shares her diagnosis story and their journey as a family so far. However, Isla steals the show, talking about her horse riding and how she is raising money to support the research into a treatment and a cure for FOP.
ITV News: ‘I haven’t hugged my son in years’
Listen to Avi, Rachel and Oliver, along with their families, about the impact FOP has had on their lives. Avi and his mum talk honestly about how FOP has impacted their mental wellbeing, Rachel talks about the vital role her carers play, and Oliver shares his hobby of miniature train driving.
Rare Disease International: What is a rare disease?
A short video, suitable for children, which gives an internationally endorsed description of Rare Diseases. It has been developed by RDI with a global panel of experts and in collaboration with the World Health Organization’s International Classification of Diseases (WHO ICD)
STOPFOP 2023: Trial Update Webinar
We hosted a webinar with Professors Alex Bullock (University of Oxford), Marelise Eekhoff (Amsterdam University Medical Centre), and Richard Keen (Royal National Orthopaedic Hospital, London). Professor Alex Bullock and Professor Marelise Eekhoff explain the research behind the trial and the progress so far, with Professor Richard Keen updating patients on what enrollment on the trial would entail.
For more information on the trial, visit: www.en.stopfop.com
Born Different: The Woman who’s Turning to Stone
Rachel Winnard shares an insight into her life with FOP. Follow a day in Rachel’s life as she talks about the challenges she faces as a result of her FOP, and laugh with her as she sees the funny side of things.