The FOP Registry launched in four more languages - German, Italian, Portuguese and Spanish
Disease registries are a critical resource for rare disease researchers and drug developers. In 2015, the IFOPA launched a single, worldwide patient registry for FOP.
Already, nearly 25% of the known FOP patient population (203 patients) have registered!
Achieving 203 registrants is incredible as, up until now, the Registry has only been available in English. Recently, the FOP Registry launched in four more languages - German, Italian, Portuguese and Spanish.
The IFOPA is excited to empower more patients around the world with this unique opportunity to directly contribute to FOP research.
Thank you to Moira Liljesthröm, Argentina; Dr. Patricia Delai, Brazil; Nadine Grossman and Patrick Grossmann, Germany; and Simona Vallara and Massimo Alfieri, Italy for assisting with the translations.
Get an overview of the FOP Registry and learn more about why your participation is so important.
Questions about how you can participate? Email [email protected].