For Immediate Release
Global DARE Foundation Awarded Prestigious Chan Zuckerberg Initiative’s
Rare As One Program Grant to Advance Refsum Disease Research and Care
October 1, 2024– Global DARE Foundation is proud to announce that it has been awarded a significant grant from the Chan Zuckerberg Initiative’s (CZI) Rare As One program. This grant will empower Global DARE to build a robust, community-led collaborative research network, closing critical data gaps in Adult Refsum Disease and driving advances in diagnostics and treatments.
Adult Refsum Disease, a rare metabolic disorder, often takes many years to diagnose, resulting in delayed care and reduced quality of life for those affected. With this grant, Global DARE will dedicate resources to expanding its research network, engaging individuals and families in shaping research priorities, and raising awareness among clinicians to encourage earlier diagnosis.
“This grant will be transformative for people like myself and so many others in our community,” said Kristie DeMarco, founder and president of Global DARE Foundation. “It will help us move the needle on improving care, developing targeted therapies, and ultimately enhancing the quality of life for everyone affected by Refsum Disease.”
Through the support of the Rare As One program, Global DARE will hire dedicated staff to sustain progress and provide the necessary infrastructure to foster collaboration with other rare disease organizations. This comprehensive approach ensures that individuals impacted by Refsum Disease will have a voice in research, from the development of therapies to the improvement of clinical outcomes.
For more information on the work being done at Global DARE Foundation, and for updates on this grant, please visit Global DARE Website. To learn more about the Rare As One program, visit rareasone.org.
About Global DARE Foundation
Global DARE Foundation is a nonprofit organization dedicated to raising awareness, driving research, and advocating for individuals affected by Adult Refsum Disease worldwide. The organization partners with medical experts, researchers, and the Refsum community to improve diagnosis, treatments, and quality of life for those living with this rare condition.
For media inquiries, please contact:
Contact: Kristie DeMarco
Email: kristie.demarco@globaldare.org
Website: https://www.defeatadultrefsumeverywhere.org
