Chan Zuckerberg Initiative (CZI) – Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA

CZI invites applications from collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing our understanding of the fundamental science of rare diseases.

The focus of the RFA is on rare neurodegenerative diseases and neurological diseases with neurodegenerative features. Examples of diseases that would fall within scope include, but are not limited to, lysosomal storage disorders, neuropathies, spastic paraplegias, ataxias, leukodystrophies, rare metabolic and autoimmune disorders leading to neurodegenerative disease, myopathies and muscular dystrophies, encephalophathies, and rare epilepsies in cases where there are degenerative features. Neurodevelopmental and neuropsychiatric disorders that are not considered neurodegenerative by consensus clinical criteria (autism, for instance) are not within scope for this RFA.

A key aim of this RFA is to encourage research in rare neurodegenerative diseases where research has been limited; rare disease areas where there are currently robust, mature research efforts and active research communities and/or significant funding by federal and philanthropic initiatives will be of lower priority. Examples of rare neurodegenerative disease areas which we consider to be mature fields of research include, but are not limited to, ALS, Huntington’s Disease, Frontotemporal Dementia, Spinal Muscular Atrophy.

CZI particularly encourages project proposals that address health disparities or focus on rare diseases that predominantly affect underrepresented populations, particularly ancestries that are underrepresented in biomedical research.

CZI anticipates awarding $500,000 per year for a total of $2,000,000 for 48 months. Research teams will be awarded $400,000 per year for a total of $1,600,000. Patient organizations will receive $100,000 per year for a total of $400,000. This will be awarded separately and directly to the patient organization.

For more information, potential applicants are encouraged to attend an informational webinar on Wednesday, February 16 from 9 – 10:30 a.m.