Patient-Partnered Collaborations for Rare Neurodegenerative Disease

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 our 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.


  • Applications may be submitted by US 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.
  • 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.
  • Each application should designate one Principal Investigator (PI) as the Coordinating Principal Investigator (Coordinating PI). The Coordinating PI will act as the administrative contact between CZI and all other PIs on the grant (co-PIs). The Coordinating PI must submit the application on behalf of all PIs. The Coordinating PI must be affiliated with the institution submitting the application, and grant funds will be awarded to that institution, which will take responsibility for distributing funds to all other research institutions. Note that institutions outside the U.S. may not subcontract to U.S. institutions, so please be mindful when selecting the Coordinating PI/institution.
  • Principal Investigators may only serve as funded Principal Investigators on one application. They can be involved in multiple applications as unfunded collaborators, but should not be named as Coordinating PIs or co-PIs on multiple applications.
  • PIs/co-PIs on one application may be employed at the same or at different research institutions.
  • PIs/co-PIs must have an academic appointment and be in an independent faculty position or equivalent at an accredited college, university, medical school, or other research facility at the time of grant start. Independence is demonstrated by institutional support for independent research activities.
  • Collaborators from companies are permitted as long as no funds are requested to support them or their work and there is full compliance with CZI policies regarding open science.
  • Early-career investigators are strongly encouraged to apply as Coordinating PIs as well as co-PIs.
  • Meta employees, including employees of any subsidiary Meta entities, as well as employees of Chan Zuckerberg Initiative, LLC, are not permitted to apply.
  • CZI reserves the sole right to decide if an applicant and applicant institution meet the eligibility requirements.
  • CZI reserves the right to request budget changes prior to award.
  • Prior to award, all grant applications will be reviewed for compliance with the United States Treasury Department’s Office of Foreign Asset Control (OFAC) sanctions program, the United States Department of Commerce’s export administration regulations, the Foreign Corrupt Practices Act (FCPA), any other applicable U.S. laws and regulations, and any corresponding laws and regulations in the country where the applicant is based. All grant agreements will also require the grantee to comply with these laws and regulations. For additional information please refer to: the U.S. Treasury Department’s resources, the International Trade Administration’s website on US Export Controls, and the Department of Justice’s website on the FCPA.
  • 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.


Awards are US$2,000,000 total costs for four years for each project (distributed amongst research institutions and a patient organization). The award period for each RFA is an initial two years of funding, followed by an additional two years, pending evaluation.

Total project budgets should be US$500,000 total costs (inclusive of 15% of indirect costs) per year for a total of US$2,000,000 total costs for 48 months.

Application instructions

All applications must be completed and submitted by the PI through CZI’s online grants management portal at It is recommended that applicants familiarize themselves with this portal well in advance of the application deadline. Detailed application instructions are available below in the Detailed Application Instructions section, as well as in the grants management portal.

For more information, please visit the website

Webinar with more details about this opportunity is available here. 


May 24, 2022. Full Proposal Deadline. Applicants (not ORS) submit the application.SFU Signature Sheet, full proposal and institutional form are due to no later than 3 business days prior to the proposal deadline.



Upcoming Deadlines