!!!! New RRP Patient Registry!!!!

Please help us and the RRP medical/research community by being part of an international RRP registry.  The RRPF has coordinated with CoRDS (an organization that specializes in developing HIPAA and IRB compliant registries for rare diseases. By taking
this survey your data will be part of a comprehensive epidemiological database of patient information. Your personal confidentiality will be maintained at all times.

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