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.
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
Let Their Feet Lead the Way: Tools for Early Identification of FOP
This PeerVoice panel discussion on fibrodysplasia ossificans progressiva, or FOP, is led by Professor Richard Keen and Dr Angela Cheung (University of Toronto) and Chris Bedford-Gay as a patient/parent representative.
The discussion was supported by an educational grant from Ipsen. The intended audience is the medical community to improve the diagnosis rate for people with FOP and to reduce the likelihood of misdiagnosis and the resulting interventions. Resources are available on their website.
In Pursuit of a Cure: AJ’s Story
Meet AJ who lives with FOP. He talks about his hobbies and his FOP, and why a cure for FOP is so important to him and how In Pursuit of a Cure could make a huge difference to his life
In Pursuit of a Cure: Sienna’s Story
Listen to Sienna talk about living with FOP, and meet her family, who talk about why In Pursuit of a Cure is so important for their daughter and everyone else affected by FOP.
In Pursuit of a Cure: An Introduction to Gene Therapy
In case you missed the webinar, here is a recording which gives an introduction to gene therapy; one of the new ways researchers are approaching the quest to find a treatment and a cure for FOP.
The Balancing Act
Professor Richard Keen (RNOH) and Nancy Sando, Michigan USA, talk about FOP and the challenges living with FOP creates. The segment is sponsored by Keros Pharmaceuticals who are researching into a treatment for FOP.
STOPFOP: Webinar Update
The webinar from the STOPFOP team, explaining about the trial, in preparation for its reopening after the delay due to Covid-19 pandemic.
ECHO: Fibrodysplasia Ossificans Progressiva by Edward Hsaio, MD, PhD.
Tutorial on Fibrodysplasia Ossificans Progressiva by Edward Hsiao MD, PhD Associate Professor of Medicine at University of California San Francisco (UCSF) Health
A Message from our Friends
A message from some of our doctors, researchers, families, and supporters, in celebration of our community. We were not able to meet in person for our biennial Conference and Family Gathering in May 2020 due to the Coronavirus pandemic.
For a Chance – Nadine
Nadine, who is living with FOP, shares her story. Most interesting, is how she has excelled as a scientist and is now a researcher, looking into effective treatments for FOP.
‘Dual Deprivation’ by Sandy Ayoub, Student Voice 2019 Runner Up, St. George’s, University of London
Listen to Sandy Ayoub, a final year medical student, talk about her experience of rare disease teaching at medical school and how she learned about FOP. Sandy took part in The Student Voice Eassy prize last year, and was runner up with her essay entitled Dual Deprivation. She looked into the impact of living with a rare disease on a patient’s mental wellbeing, and also the toll it took on the wellbeing of the patient’s carer. Sandy worked with a family who were living with FOP, as well as FOP Friends. Her essay was judged runner up in the competition.
Read Sandy’s essay here: Dual Deprivation: understanding the psychological burden
For more information on the Find a Cure organisation, visit: https://www.findacure.org.uk
For more information on the competition, visit: https://www.findacure.org.uk/student-voice-prize/