Webinars
Your voice: How the FOP community can drive access to approved treatments
Tuesday 20th October 2026 @ 7pm
Via Zoom
Presenter: Dr Andrew Rankin, Trustee with Dr Sarah Dixon-Clarke (FOP Friends), Professor Richard Keen (RNOH) and Professor Kassim Javaid (NDORMS, University of Oxford)
With promising therapies like Regeneron’s garetosmab (Pasatru) receiving FDA approval, and an announcement from the FDA regarding Mirum Pharmaceuticals’ zilurgisertib application expected very soon, these are rapidly changing times for the FOP community.
We anticipate the respective pharmaceutical companies will be applying for a UK licence and NHS funding soon, and it is vital our community is ready to take action the moment they do.
Join us for a dedicated webinar where we will break down:
Pipeline & Approvals Update: An update and explanation of the drugs currently in development and recently approved for FOP, including how they work.
The UK’s Regulatory Process: A clear, straightforward breakdown of how the MHRA and NICE review process works.
The Power of Your Voice: How your family’s lived experience directly influences decisions made by the MHRA, NICE, and devolved bodies across Scotland, Wales, and Northern Ireland.
When it comes to deciding which treatments get approved and funded, and ensuring they reach the people who need them most, our voices are our strongest tool.
Live Q&A: The webinar will conclude with an open Q&A session, offering an opportunity for attendees to ask questions.
Please note: Programme subject to change
After the Trial: What next? Getting a drug into a clinic
Tuesday 30th June 2026 @ 7pm
Via Zoom
Presenter: Professor Richard Keen, Royal National Orthopaedic Hospital
Following recent positive clinical trial results, Regeneron and Incyte/Mirum are advancing their respective applications for market approval in the USA.
Professor Richard Keen will discuss what these developments mean for patients and families across the UK. He will outline the pathways pharmaceutical companies must navigate to achieve UK market access, beginning with regulatory approval from the Medicines and Healthcare products Regulatory Agency (MHRA), moving through the role of the National Institute for Health and Care Excellence (NICE), and specifically highlighting the Highly Specialised Technologies (HST) evaluation process. Finally, he will explain how these medicines ultimately reach patients through NHS England funding and commissioning frameworks.
The webinar will conclude with a Q&A session, offering an opportunity for attendees to ask questions.
Please note: Programme subject to change
