What happens when FOP experts are all in one room?

Highlights from this year’s FOP Drug Development Forum

What happens when you gather the top FOP researchers, clinician scientists and pharmaceutical companies studying FOP from around the world in one room? 

Incredible progress and hope! 

Every two years, we have the honor of hosting the FOP Drug Development Forum (DDF), the only scientific conference in the world solely focused on fibrodysplasia ossificans progressiva (FOP).  

This past June, FOP experts gathered in Stockholm, Sweden (or participated virtually) for the sixth DDF—representing 43 different academic institutions and nine companies working on or interested in FOP from around the world. 

Here's what one participant had to say:



Our team at the IFOPA left energized and excited for the future of FOP research! As we close this year and look forward to 2025, I wanted to share some event highlights: 

  • Before the DDF began, 11 members of the International Presidents’ Council (IPC) traveled to Stockholm (and others joined via Zoom) to discuss how each FOP national organization is carrying out its mission. 
  • Also prior to the start of the DDF, the FOP Registry Medical Advisory Board (MAB) reviewed the Registry data fields with IFOPA staff and discussed ways to streamline and improve information provided by patients and caregivers.

  • The DDF kicked off with an overview of the current clinical trial landscape, including key findings and updates from four trials

  • Expert talks on approaches and innovation in developing treatments for FOP

  • Expert talks to increase understanding of disease pathogenesis (the process by which a disease develops).

  • Participation by 10 Emerging Investigators, fostering the development of the next generation of FOP researchers.

  • Opening and closing talks and panels featuring parents and patients offered incredible insight for attendees into the day-to-day experience of living with FOP. 

This list just scratches the surface of our time together! The DDF provides an invaluable confidential space where researchers and clinician scientists can share their work, ask questions and get feedback and new ideas to continue to improve their research. 

We are grateful to our DDF sponsors for their support which helps underwrite a portion of the costs of hosting an event of this size and scope.

Visionary Partner

 

DDF Supporter


 

Friend of the DDF




The next DDF will be held in 2027 in the United States. We’re looking forward to another productive, encouraging event and thank all the FOP professionals who traveled to be with us this summer. If you are a researcher, clinician scientist or work for a pharmaceutical company studying FOP and would like more information about the next DDF, email us at [email protected]

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter