Dear Patient Community, Family Members, Cheerleaders, Donors, Researchers and Clinicians:

Today is a special day. We have important news to share with you.

We are excited to announce that we are one of 30 recipients of a $450,000, two-year Rare As One grant from the Chan Zuckerberg Initiative (CZI). As part of the Rare As One Network, we’ll benefit from training and technology support from CZI experts, as well as from the experiences of other rare disease organizations in the Network.

CZI is providing these patient organizations, including APBDRF, with training, community mentorship, and capacity-building services to assist them in establishing a network of researchers and clinicians, convening their community, and developing a research agenda. The new collaborations made possible by our grant will enhance and expand our global network of clinicians, researchers, and allied stakeholders.

The APBDRF must continue to fundraise in order to support the actual research to find cures and therapies for our loved ones who suffer with APBD.

Our foundation, the APBDRF, was one of 280+ groups that submitted a Letter of Interest to CZI in July 2019. We were fortunate to be part of the subset of 83 patient-advocacy groups invited to submit a formal proposal in October 2019, and then ultimately awarded the grant.

Under the project, Dr. H. Orhan Akman (Columbia University) will serve as our Lead Researcher and Dr. Edwin Kolodny (New York University) as our Lead Clinician. Other members of the grant’s core team are Jeff Levenson, who is our designated Patient Leader; Harriet Saxe (APBDRF Board of Directors); and Jim Meier (Consultant).

We thank the writers of the grant and all who contributed to the process.

The Rare As One Project has been made possible in part by a grant from the Chan Zuckerberg Initiative. Founded by Priscilla Chan and Mark Zuckerberg in 2015, CZI is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. CZI pairs engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone.

Read more about this exciting new project uniting the 7,000 rare diseases into one community fighting for cures.

– The APBD Research Foundation