BPAN Warriors

CheckRare Panel Discussion: Data Silos Are Hindering Rare Disease Research Great conversation with Drs Paul Howard, Eric March, and Andrew Mulberg about the perils of data silos and how they are disrupting rare disease research.

BE AN ACTIVE PART OF BPAN RESEARCH AND ACCELERATE THE PATH TOWARDS TREATMENT IDENTIFICATION AND IMPROVED CLINICAL CARE!

https://bpan.rare-x.org/

“The RARE-X technology platform and other support services are free of charge to patient organizations,” said Megan O’Boyle, RARE-X patient engagement lead. “This removes the burden for patient groups to become data governance experts and raise additional funding for data collection tools. RARE-X’s patient engagement team members serve as allies, educators and partners as patients begin collecting data on the platform.”

https://globalgenes.org/2021/07/07/patient-groups-begin-using-rare-xs-data-collection-platform/

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Patient Groups Begin Using RARE-X’s Data Collection Platform - Global Genes Rare Daily Staff RARE-X, a non-profit organization dedicated to enabling patient communities to easily manage, aggregate, and share their de-identified data securely, began onboarding patient organizations representing eleven rare diseases. RARE-X’s goal is to provide a platform for patient organi...

NEW, Discounted Virtual Registration for RARE Patient Advocacy Summit

We’re less than 3 weeks away from the 2021 RARE Patient Advocacy Summit, happening virtually September 27-29. Don’t miss out on what's new including the first-ever international regional meetings with rare leaders, dedicated office hours for you to interact directly with speakers, and sessions on mental health, sexuality, health equity & more. Take advantage of new, reduced pricing for patients, advocates & caregivers by registering today!

REGISTER TODAY: https://web.cvent.com/event/289bd182-abf4-49b0-90be-c2320566c276/regProcessStep1?eType=EmailBlastContent&eId=d0cdefec-3801-48ba-bed7-cd495b6f71c3

Invitae to Acquire Ciitizen to Strengthen its Patient-Consented Health Data Platform to Improve Personal Outcomes and Global Research

We are thrilled about this next chapter and the opportunities it brings to better serve our BPAN patients.

https://www.prnewswire.com/news-releases/invitae-to-acquire-ciitizen-to-strengthen-its-patient-consented-health-data-platform-to-improve-personal-outcomes-and-global-research-301369974.html