We are very pleased to announce the IFOPA has secured FOP Registry sponsorship!
With funding support from Blueprint Medicines, Clementia Pharmaceuticals and Regeneron Pharmaceuticals, the IFOPA has assured that the FOP Registry can continue to meet its goals to accelerate FOP research, to enable clinical trials, and to improve our understanding of this disease. We are so grateful to our sponsors for sharing this vision and for ensuring that we can continue to build on the Registry’s success. Our biopharmaceutical partners have agreed to support the FOP Registry through 2020.
The FOP Registry was launched in 2015 with the cost of the design and build of this important research tool funded entirely by public contributions and special events undertaken by FOP families. Your commitment built an incredible scientific resource! However, additional investment was required to continue to maintain and expand this research asset for the FOP community.
About the FOP Registry
Physicians, patients and caregivers from around the world contribute information to the FOP Registry to help improve the lives of people with FOP.
The FOP Registry, which is the largest and most in-depth collection of FOP clinical and medical information, is independently operated by the IFOPA with a single purpose – to help clinicians and researchers better understand FOP in order to accelerate the development and availability of disease-modifying treatments.
Anyone treating or living with FOP is eligible to participate by entering information every six months. It’s simple, secure and participant anonymity is always assured. The FOP Registry is also a resource for practitioners to publish and help elevate awareness about this rare disorder. The Registry is governed by an advisory board of renowned physicians with direct expertise managing and treating FOP.
You can learn more and participate in the FOP Registry.