The RARE-X Corporate Advisory Council will support RARE-X’s innovative mission and provide guidance on the future of patient-powered data collection and sharing for rare disease
Aliso Viejo, CA —October 26, 2021 — RARE-X, a nonprofit organization dedicated to enabling patient communities to easily collect, manage, and share their health data through best in class technology, data governance, and platform security, today announced the launch of its newly formed Corporate Advisory Council. The RARE-X Corporate Advisory Council will include industry, academia, patient organizations, payors, researchers, and data/tech companies, all supporting the RARE-X mission and vision.
The purpose of the Council is to bring together various perspectives supporting patient-owned data collection, data sharing, and data interoperability, all to transform and accelerate research. With insights from the group, RARE-X will continue to enhance the infrastructure, governance, and platform framework to ensure that all stakeholders’ needs are met. This Council will commit to addressing key challenges that are critical to RARE-X programs and priorities and will help architect solutions, to meet the growing needs in rare disease. Founding members will also contribute to developing the structure of the CAC, guiding principles, and first outputs.
“Leaders joining the RARE-X Corporate Advisory Council will help steer the future of patient-owned federated data sharing,” said Charlene Son Rigby, chief executive officer of RARE-X. “From guiding best-in-class consent and data sharing agreements to ensuring the RARE-X platform is adopted internationally, the Corporate Advisory Council will have visibility and input into RARE-X’s expansion.”
In addition to supporting the initial work of RARE-X and its mission, this gathering of rare disease community leaders will also provide the opportunity for open dialogue and the pursuit of collaborations wherever possible. “There are many extraordinary efforts and programs being developed throughout the ecosystem, and this will help provide insights early on, gaining consensus, prioritizing and identifying areas to collaborate,” said Nicole Boice, Founder of RARE-X.
Current members and collaborators include the following companies: Alexion, Horizon, Huma, Pfizer, Roche and Genentech, and Travere Therapeutics. In addition, founding member associations and patient advocate nonprofits are Alliance for AI in Healthcare, ARM Foundation for Cell and Gene Medicine, Child Neurology Foundation, Global Genes, and The Assistance Fund.
Members of the RARE-X Corporate Advisory Council have a unique opportunity to define and develop key initiatives that will shape the multi-phased work of RARE-X over the next 1-5 years. RARE-X aims to create an ecosystem of accessible data to accelerate research and therapeutics on a global level.
“We at Huma are very excited to be part of the RARE-X Corporate Advisory Council, because by harnessing all these areas of expertise, we can help ensure better outcomes for patients with rare diseases,” said Patricia Bradley, US Chief Commercial Officer at Huma. “Together, we can work out how to reduce the burdens on patients while building larger datasets to help researchers make the breakthroughs we’re all looking for.”
For more information about the Corporate Advisory Council priorities please join us HERE. RARE-X seeks seeking leaders in biopharma and other relevant rare disease organizations to join the RARE-X Corporate Advisory Council. Please contact Nicole Boice for more information.
RARE-X is a 501(c)(3) rare disease technology nonprofit focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data-sharing technology. RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.
Tom Hume, Marketing Communications – RARE-X