RARE Daily

CZI Awards $13 Million to Patient-Led Organizations Advancing Rare Disease Research

November 3, 2021

The Chan Zuckerberg Initiative awarded a total of $13 million in funding to 40 patient-led, rare disease advocacy organizations that are working with researchers and clinicians to accelerate research in their disease areas.

The grants, part of CZI’s Rare As One Project, are aimed at supporting the work that patient communities are doing to drive progress in the fight against rare diseases.

“For biomedical research in rare diseases to advance quickly and effectively, patients must be full partners with scientists and clinicians in research,” said CZI Head of Science Cori Bargmann.

A total of 20 patient-driven rare disease organizations will join the initial 30 grantee organizations awarded in February 2020 as part of the Rare As One Network. Funding will support these organizations to advance the development of an international, patient-led collaborative research network in the organizations’ individual disease area of focus, strengthen their organizational capacity, convene their communities, and align patients and researchers towards shared priorities.

The second cycle placed additional emphasis on the potential to address diagnosis-related research challenges and the importance of addressing diversity and inclusion in those efforts.

The following 20 organizations selected to join the Rare As One Network will each receive $600,000 over the three-year grant period, for a total of $12 million:

●             A Cure for Ellie

●             A Foundation Building Strength

●             Angioma Alliance

●             CACNA1A Foundation

●             Chelsea’s Hope Lafora Children Research Fund

●             Cure VCP Disease

●             FamilieSCN2A Foundation

●             Foundation for Sarcoidosis Research

●             Mission: Cure

●             PACS1 Syndrome Research Foundation

●             PCD Foundation

●             Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network

●             Raymond A. Wood Foundation

●             Recurrent Respiratory Papillomatosis Foundation

●             Shwachman-Diamond Syndrome Alliance

●             Smith-Kingsmore Syndrome Foundation

●             Tatton Brown Rahman Syndrome Community

●             Team Telomere

●             The Stiff Person Syndrome Research Foundation

●             The TBCK Foundation

The following additional 20 organizations will each receive $50,000 for general operating support or core program support in support of their quest to accelerate research and find treatments and cures for rare disease:

●             17q12 Foundation

●             ASXL Rare Research Endowment Foundation

●             Autoimmune Hepatitis Association

●             CSNK2A1 Foundation

●             CureGPX4

●             Global DARE Foundation

●             Hope for Hypothalamic Hamartomas

●             International SCN8A Alliance

●             IPPF

●             National Foundation for Ectodermal Dysplasias

●             Osteogenesis Imperfecta Foundation

●             Sickle Cell Transplant Advocacy and Research Alliance

●             SLC6A1 Connect

●             Soft Bones, Inc., The US Hypophosphatasia Foundation

●             Spinal CSF Leak Foundation

●             The APS Type 1 Foundation

●             The Global Foundation for Peroxisomal Disorders

●             The Naa10 Foundation D/B/A Ogden Syndrome Foundation US

●             United MSD Foundation

●             Vasculitis Foundation

Author: Rare Daily Staff

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