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BPAN WARRIORS CONNECT COLLABORATE CURE HOME RESEARCH PATIENT RESOURCES OUR TRIBE OUR PARTNERS DONATE RARE POV BLOG More 414 909BPAN RAREX unveils plan to radically change data collection and sharing to accelerate advances for patients in rare disease How One Rare Disease Advocate Learned to Look Across Diseases Study Makes Economic Case for Benefits of Data Sharing to Improve Diagnosis and Treatment of Rare Disease Patients Harnessing Machine Learning to Improve Diagnosis and Treatment of Rare Diseases Making Collaboration the Rule Rather than the Exception Why Data Sharing Is Critical for Accelerating Progress in Rare Disease PatientPowered Registry Boosts the Study of a Rare Disease What is Data Governance. A RAREX Definition Series Video RAREX Federated Data for Patients and Researchers Data Standards and RAREX Why participate in data collection. RAREX Definition Series Real World Data and Real World Evidence BPAN WARRIORS Welcome to BPAN Warriors. Whether you are a parent of a child recently diagnosed with BPAN BetaPropeller ProteinAssociated Neurodegeneration a researcher with interest in the ultrarare disease or you are a family member friend community advocate or healthcare provider who has been touched by someone who lives with this ultrarare genetic condition we welcome you.