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Grants to USA, Canada, and International Researchers for
Studies Related to Neurological Disorders and Diseases

Patient-Partnered Collaborations for Rare Neurodegenerative Disease

Agency Type:

Foundation / Corporation

Funding Source:

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Chan Zuckerberg Initiative (CZI)

Conf. Date:


Deadline Date:

05/24/22 5:00 PM Pacific Time


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Grants to USA, Canada, and International researchers affiliated with nonprofit organizations, institutions, IHEs, and government agencies for research addressing rare diseases. Funding is intended for a range of studies related to neurological disorders and neurodegenerative diseases.

The Chan Zuckerberg Initiative invites applications from collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing an understanding of the fundamental science of rare diseases. The Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA aims to advance the understanding of the pathophysiology and mechanistic underpinnings of rare neurodegenerative and neurological disorders.

The CZI Neurodegeneration Challenge Network has three key goals:

  1. To make fundamental advances toward understanding neurodegeneration;
  2. To bring new ideas and talent to the field of neurodegeneration; and
  3. To encourage and experiment with a new interdisciplinary, collaborative, and open science research model involving scientists, clinicians, and engineers.

For information on the Disease Scope, see:

Scientific Scope

Consistent with the Foundation’s focus on discovery science, this RFA is open to proposals for discovery science projects that are exploring foundational understanding of causes, progression, or mechanisms of rare neurodegenerative and neurological disorders. Proposals should center on a research question and clear research strategy. Examples of the types of projects that would meet these criteria could include, but are not limited to:

  • Projects that aim to address critical knowledge gaps about disease causes, clinical progression or mechanisms of action
  • Projects that bridge natural history studies and mechanistic investigations
  • Development of new models to support better understanding of disease mechanism
  • Preclinical mechanistic work in support of therapeutic development; for instance, perturbation studies on a candidate mechanism in a disease model, proof of concept for reversal, disease mitigation in a disease model. The emphasis of this RFA will be on mechanistic work that provides insight into disease biology rather than therapeutic drug screens.
  • Collaborative cross-disease research (for instance, exploring common mechanisms that affect more than one disease)
  • Data-centered approaches that generate and/or analyze biological and clinical data sets, for the purpose of developing biomarkers, insights into disease mechanisms
  • Longitudinal history studies that track disease development and provide insight into critical periods of disease progression and potential critical therapeutic windows
  • Projects that provide critical insights into comorbidities, for instance, neuroimmune or metabolic influences on neurodegeneration.

This RFA will prioritize bringing new investigators and early-career scientists into the field. There will be an additional emphasis on recruiting scientists from fields outside the core of neurodegeneration and rare disease, and will target work that addresses the biology of rare neurodegenerative diseases in a novel, innovative, interdisciplinary, and disease cross-cutting way.

GrantWatch ID#:

GrantWatch ID#: 202738

Estimated Size of Grant:

Awards are $2,000,000 USD total costs for four years for each project.

Term of Contract:

Award period and start date: The award period for each RFA is for an initial two years of funding, followed by an additional two years, pending evaluation. The expected start date is December 1, 2022.

Additional Eligibility Criteria:

Researchers/Research Institutions:
Applications may be submitted by domestic and foreign nonprofit organizations, public and private institutions, such as colleges, universities, hospitals, laboratories, units of state and local government, and eligible agencies of the federal government. For-profit organizations are not eligible to receive funding but may be involved in projects as a collaborator. All grants will be awarded to institutions, not individuals. Research institutions may be based in any country.

Applications will each have two lead Principal Investigators (PIs): one representing the research team and the other representing the patient organization. Teams should be made up of a minimum of two investigators with a maximum of five investigators, including the patient organization leader. For additional information regarding PIs and their responsibilities, see the URL for Full Text (RFP).

The Foundation believes that the strongest teams incorporate a wide range of voices. Those underrepresented in science and technology are strongly encouraged to apply. This includes but is not limited to women, those with disabilities, underrepresented racial and ethnic groups, LGBTQ individuals, and organizations representing disease areas that disproportionately impact underrepresented or underserved communities.

Patient Organizations:
- Patient organizations must be patient-led rare disease organizations (advocacy groups, disease foundations or organizations that represent patients, engage patients in key leadership roles—e.g., as founder, executive director, board member, key staff, etc.—and are patient-centered in their programming).
- Patient organizations must be organizations that are tax-exempt under section 501(c)(3) of the United States Internal Revenue Code, OR have a valid fiscal sponsor that is tax-exempt under section 501(c)(3) of the Internal Revenue Code, OR a 501(c)(3) charity/non-profit organization equivalent for non-US based organizations. Non-US based organizations will be subject to Equivalency Determination.
- Patient organizations must be focused on a rare disease, disorder, or syndrome, or group of closely related rare diseases, disorders, or syndromes (defined, for instance, as a condition that affects fewer than 200,000 people in the U.S., or no more than 1 in 2,000 people in the European Union).

Ineligible applicants:
- Meta employees, including employees of any subsidiary Meta entities, as well as employees of Chan Zuckerberg Initiative, LLC, are not permitted to apply.

This RFA will not focus on therapeutic or clinical development.

Neurodevelopmental and neuropsychiatric disorders that are not considered neurodegenerative by consensus clinical criteria (autism, for instance) are not within scope for this RFA.

Areas that are out of scope of this RFA:
- Clinical trials or pre-clinical research aimed primarily at clinical trial readiness (e.g., toxicology studies)
- Tool or resource development that is not tied to a specific research plan or agenda. This could include the development of research technologies, models (cell lines, animal models) or other types of infrastructure development (e.g., registries). NDCN views the development of hiqh-quality, robust research tools as critical for accelerating science; however, for this RFA, such tool and resource development efforts should be clearly connected to specific research questions.

This RFA is intended to support early stage research on rare diseases with sparse scientific research to date. It is not intended to further already mature areas of research, such as those supported by large organizations with extensive research programs or areas funded by governmental funding (i.e., NIH or the equivalent). NDCN will prioritize support for patient organizations with annual research budgets less than $5 million.

Pre-Application Information:

Key Dates:
February 1, 2022: Application portal opens
May 24, 2022: Applications due by 5 p.m. Pacific Time
Late October 2022: Earliest notification of decisions (subject to change)
December 1, 2022: Expected start date of award period

Applicants are welcome to apply to both this opportunity and the Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease RFA; however, the application and scope of work must be distinct.

Researchers/Research Institutions:
- More than one application will be accepted from each research institution.
- Each Coordinating PI and patient organization may only submit one application to this RFA.

Patient Organizations:
- Each patient organization may only be represented in one application to this RFA.
- Lead Patient Organization PIs may only be named on one application.

To view previously-recorded information sessions:
View February 16th Recorded Information Session:

Contact Information:

Before starting your grant application, please review the funding source's website listed below for updates/changes/addendums/conferences/LOIs.


For administrative and programmatic inquiries, or other questions pertaining to this RFA, please contact

For technical assistance with SMApply, please contact

URL for Full Text (RFP):

Geographic Focus:

USA: Alabama;   Alaska;   Arizona;   Arkansas;   California;   Colorado;   Connecticut;   Delaware;   Florida;   Georgia;   Hawaii;   Idaho;   Illinois;   Indiana;   Iowa;   Kansas;   Kentucky;   Louisiana;   Maine;   Maryland;   Massachusetts;   Michigan;   Minnesota;   Mississippi;   Missouri;   Montana;   Nebraska;   Nevada;   New Hampshire;   New Jersey;   New Mexico;   New York City;   New York;   North Carolina;   North Dakota;   Ohio;   Oklahoma;   Oregon;   Pennsylvania;   Rhode Island;   South Carolina;   South Dakota;   Tennessee;   Texas;   Utah;   Vermont;   Virginia;   Washington, DC;   Washington;   West Virginia;   Wisconsin;   Wyoming

Array ( [0] => American Samoa (USA); [1] => Guam (USA); [2] => Puerto Rico (USA); [3] => Virgin Islands (USA); [4] => Northern Mariana Islands (USA); )

USA Territories: American Samoa (USA);   Guam (USA);   Puerto Rico (USA);   Virgin Islands (USA);   Northern Mariana Islands (USA);

USA Compact Free Associations: The Federated States of Micronesia (USA)   Marshall Islands (USA)   Republic of Palau (USA)

Canada: Alberta;   British Columbia;   Manitoba;   New Brunswick;   Newfoundland and Labrador;   Northwest Territories;   Nova Scotia;   Nunavut;   Ontario;   Prince Edward Island;   Quebec;   Saskatchewan;   Yukon;


International country outside of the USA, Israel and Canada.

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