FOP Biobank is Accepting Donations Again

Biobank Reopens After a Brief Pause Due to COVID-19

After a brief pause due to COVID-19, we are pleased to announce that the IFOPA’s FOP Biobank has reopened and is accepting donations. The FOP Biobank collects blood, urine, saliva (DNA) and tissue (from “baby teeth”) from people with FOP. These important samples are provided to researchers all over the world. Qualified scientists can use these samples for research that looks into factors that affect treatment and disease outcomes. 
Our Biobank has gotten off to an impressive start with over 100 donations, and researchers are already using these samples for their FOP research. However, the FOP Biobank needs additional donations from people with FOP. In addition, we do accept (and need!) repeat donors. So, if you have already donated once, please consider another donation to our Biobank. 
If you live in the United States, please visit to learn more about the FOP Biobank and to start the donation process. You can also email the FOP Biobank investigator, Dr. Dan Perrien, at [email protected], or Adam Sherman, the IFOPA's Research Director, at [email protected], 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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