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PatientCrossroads
M.A.P. Project Featured in WSJ
PatientCrossroads collects detailed breast cancer survivor data for the Cancer Support Community M.A.P. Project.
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Lotus Tissue Repair Announces Support of First International Patient Registry for Epidermolysis Bullosa (EB)
Lotus Tissue Repair, Inc., a biotechnology company developing the first and only protein replacement therapy for the treatment of the rare genetic disorder dystrophic epidermolysis bullosa (DEB), today announced that it is providing grants to support the development and maintenance of the first international EB patient-reported registry, EBCare.org.
Office of Rare Diseases Research GRDR
The Office of Rare Diseases Research (ORDR) in collaboration with PatientCrossroads, Children Hospital of Philadelphia and WebMD, has launched a pilot program to establish a Global Rare Diseases (Patient) Registry and Data Repository (GRDR) to collect patient clinical information without any personal identifiers (de-identified information), for clinical research.