FOP Connection Registry First Annual Report

The IFOPA is very pleased to share with you the first annual report to participants from the FOP Connection Registry

The Report was delivered to the patients, parents, and caregivers who are participating in the FOP Connection Registry and summarizes selected aggregate data and the Registry’s key achievements during its first year. The Report was also provided to the FOP researchers on the FOP Connection Registry Medical Advisory Board to provide more information on the patient’s perspective of FOP.  

We hope that the Report will encourage all FOP patients to participate in the Registry on an ongoing basis and demonstrates the value of THEIR individual stories in supporting FOP research.

 

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