Successful Biobank Collection Event in Florida

FOP Biobank an invaluable resource for FOP researchers

The IFOPA’s FOP Biobank, which launched in November 2018, was welcomed with great enthusiasm at this year’s FOP Family Gathering in Orlando, Florida. Thanks to the families who generously donated to the FOP Biobank, we are now well on our way to having an invaluable resource for future FOP researchers.

As of today, the FOP community has made a total of 95 donations to the Biobank. This includes 35 participants who generously donated their blood, urine and saliva during the meeting in Orlando. At this year’s Family Gathering, we also reached a major milestone with our first series of repeat donors. Receiving multiple donations over time from the same participant greatly increases the value of our Biobank. 

“We are so pleased with the level of participation in our FOP Biobank,” shared Adam Sherman, IFOPA Research Development and Partnerships Director. “This is a community willing to do so much to advance the science of FOP. We could not be more grateful for everyone’s generosity and commitment to research.”

The IFOPA Biobank is a collection of tissue (including children’s teeth that fall out), saliva, blood and urine, as well as de-identified health information donated by people with FOP and their families. Qualified scientists can use these samples for research that looks into factors that affect treatment and disease outcomes. By sharing portions of the samples and de-identified health information with many different labs, the IFOPA’s Biobank maximizes the impact from each donation. 

Even with our impressive start, the FOP Biobank needs additional donations from people with FOP. If you live in the United States, please visit to learn more about the FOP Biobank. You don't have to attend an IFOPA event in order to donate. You can request a donation kit at You can also email Dr. Daniel Perrien, the Biobank Principal Investigator with any questions


The IFOPA oversees the FOP Biobank on behalf of the FOP research community thanks to generous support from Blueprint Medicines, Ipsen and Regeneron Pharmaceuticals.

We thank the invaluable in-kind support that has been provided by Margo Black (Vanderbilt University) and Drs. Charles Hong (University of Maryland), Ed Hsiao (University of California, San Francisco), Dan Perrien (Emory University), Bob Pignolo (Mayo Clinic), Eileen Shore (University of Pennsylvania), and Yan Ru Su (Vanderbilt University).


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