UPA Receives Prestigious CZI Grant

PRESS RELEASE

October 1, 2024

United Porphyrias Association Receives Five-Year Chan Zuckerberg Initiative Rare As One Grant
Grant will support research collaboration, enhance diagnostic tools, and strengthen global efforts to improve the lives of individuals with porphyria.

Bethesda, MD, October 1, 2024 — The United Porphyrias Association (UPA) is honored to announce its selection as a recipient of the Chan Zuckerberg Initiative’s (CZI) Rare As One grant. This five-year grant will significantly enhance UPA’s ability to build a comprehensive research network and strengthen collaboration between patients, researchers, and clinicians to accelerate progress in the diagnosis and treatment of porphyria.

The Rare As One grant will provide critical resources to empower UPA’s initiatives, including convening experts at annual summits, enhancing diagnostic tools, and expanding access to underserved communities. It will also support the creation of a porphyria biospecimen repository, a vital resource for advancing research and developing new therapies.

“We are deeply honored to be part of the Rare As One network and to receive this transformative grant from the Chan Zuckerberg Initiative,” said Kristen Wheeden [UPA President]. “This grant will propel our mission to improve outcomes for individuals with porphyria by fostering collaboration, accelerating research, and providing patients with the resources they need to thrive.”

The UPA’s connection with leading U.S. experts and collaboration with global researchers will be essential in driving the success of this grant, ensuring that the porphyria community benefits from cutting-edge research and patient-centered solutions.

About United Porphyrias Association (UPA)
UPA is a leading advocacy organization dedicated to improving the lives of those affected by porphyria. UPA works to empower patients, advance research, and foster collaboration among global experts. For more information, please visit www.porphyria.org.

About the Chan Zuckerberg Initiative (CZI)
The Chan Zuckerberg Initiative, founded in 2015, seeks to address some of the world’s most pressing challenges, from eradicating disease to improving education. The Rare As One project supports rare disease communities by providing the resources and tools needed to drive research and improve patient outcomes. For more information, please visit www.chanzuckerberg.com.

Media Contact

Kristen Wheeden
President
United Porphyrias Association
kristen@porphyria.org
301-461-9889

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