Larchmont, NY October 17, 2024 – The Barth Syndrome Foundation (BSF) is thrilled to announce it has been awarded an $800,000 USD grant from Cycle 3 of the Chan Zuckerberg Initiative’s (CZI) Rare As One Project. The CZI Rare As One Project supports and unites patient-led organizations working to advance the rare disease field by strengthening communities, building capacity, and promoting collaboration.
This five-year grant will accelerate critical research efforts toward the Barth Syndrome Foundation’s mission to save lives through education, advances in treatments, and finding cures for Barth syndrome. The funding, in addition to the access to CZI’s vast resource network, will allow the Barth Syndrome Foundation to make significant strides in our understanding of Barth syndrome and will facilitate meaningful collaborations that contribute to open science. The Barth Syndrome Foundation’s priorities will focus on modernizing and harmonizing our patient registry and building out and integrating a biobank infrastructure, with the aim of exploring new approaches toward diagnosis, identification of biomarkers, care management, and treatments.
"We are incredibly honored and excited to be selected as a Cycle 3 grant recipient of the Chan Zuckerberg Initiative's Rare As One Project," said Emily Milligan, Executive Director of the Barth Syndrome Foundation. "This generous grant will be transformative for our efforts to advance research and improve lives affected by Barth syndrome. By enhancing our patient registry and developing an integrated biobank infrastructure, we'll be able to deepen our understanding of this ultra-rare disease and explore innovative approaches to diagnosis, biomarker identification, and treatment. This support from CZI not only provides crucial funding but also accelerates our ability to facilitate future clinical studies and drive meaningful change for the Barth syndrome community."
About Barth Syndrome Foundation (BSF): Barth Syndrome Foundation and our international affiliates comprise the only global network of families, healthcare providers, and researchers solely driven by the mission to save lives through education, advances in treatments and finding a cure for Barth syndrome. Considered a role model in rare disease advocacy, BSF has funded $6.6M USD and catalyzed over $37.7M USD in funding from other sources to advance global scientific discoveries to end the suffering and loss of life from Barth syndrome. Additionally, BSF provides a lifeline to families and individuals living with Barth syndrome around the world, offering individualized support, educational conferences, a patient registry and collaborations with specialist healthcare providers to define standards of care, treatment and rapid diagnosis.
About the Chan Zuckerberg Initiative (CZI): The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of local communities. CZI’s mission is to build a more inclusive, just, and healthy future for everyone.
