Request for Applications: Rare As One (Cycle 3)

Deadline Date: February 22, 2024

 Donor Name: Chan Zuckerberg Initiative

 Grant Size: $100,000 to $500,000

The Chan Zuckerberg Initiative is inviting applications for five-year projects from patient-led rare disease advocacy organizations to join the Rare As One Network.

Through the Rare As One Network (Cycle 3) Request for Applications (RFA), CZI seeks to create a cohort of patient-led rare disease advocacy organizations that are dedicated to accelerating research across three classes of disease: channelopathies, ciliopathies, and inborn errors of metabolism (IEMs). CZI is inviting patient-led rare disease advocacy organizations focused on diseases within these three scientific focus areas to apply for a five-year grant opportunity to join the Rare As One Network. CZI will provide awardees with support to accelerate research within their individual disease areas and to work across their area of scientific focus (channelopathies; ciliopathies; or inborn errors of metabolism) to develop shared research priorities and proposals.

Funding Information

• Awards will be $800,000 total costs over five years (inclusive of up to 15% indirect), distributed on the following schedule: Year 1: $100,000; Years 2-4: $200,000/year; Year 5: $100,000. Indirect costs cannot exceed 15% of direct costs.

Duration

• Award period and start date: Awards will be five years in duration with an expected start date of October 1, 2024.

Eligibility Criteria

• Applicant organizations must:
  • Be patient-led advocacy groups, disease foundations or organizations that represent patients, employ patients in key leadership roles (e.g., Founder, Executive Director, Board of Directors), are patient-centered in their programming, and are representative and inclusive of the community they serve.
  • Be dedicated to accelerating research toward treatments and cures for a community of patients (i.e., not solely pursuing an n-of-1 therapeutic approach)
  • Be freestanding and self-governed (i.e., not a chapter or regional affiliate of a larger organization, not an international chapter of a nonprofit based in another country).
  • Be focused on a rare disease, disorder, or syndrome, or group of closely related rare diseases, disorders, or syndromes (either as defined in the U.S., as a condition that affects fewer than 200,000 people, or based on the relevant definition in the country or region where the organization is based).
  • Represent a disease or diseases that fall into one or more of the following three areas:
    • Channelopathies, a heterogeneous group of disorders resulting from the dysfunction of ion channels located in the membranes of all cells and many cellular organelles;
    • Ciliopathies, a group of genetic disorders caused by structural or functional disruption of cilia, or by abnormal cilia biogenesis, including both motile and immotile/primary ciliary disorders; and/or
    • Inborn Errors of Metabolism (IEMs), a group of diseases that result primarily from defects in specific enzymes that lead to the failure of the metabolic pathways involved in the breakdown or storage of various substances, such as carbohydrates, fatty acids, and amino acids.
  • Be tax-exempt under section 501(c)(3) of the Internal Revenue Code, have a valid fiscal sponsor that is tax-exempt under section 501(c)(3) of the Internal Revenue Code, or be a non-U.S.-based nonprofit/charitable patient-led rare disease organization that is equivalent to a 501(c)(3) designated organization. All grants will be awarded to organizations, not individuals.
  • Have an annual budget of less than $5 million USD averaged over a two year period.
• Organizations that have been previously funded through any of the following multi-year CZI Science grant programs are not eligible to apply:
  • Rare As One Network Cycle 1
  • Rare As One Network Cycle 2 (note: Cycle 2 applicants who received one-time awards of $50,000 are eligible to apply)
  • Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease
  • Patient-Partnered Collaborations for Rare Neurodegenerative Disease
• 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 organization meets the eligibility requirements.
• CZI reserves the right to request budget changes prior to award.
• They welcome applications from any country, provided the proposed work is compliant with the United States Treasury Department’s Office of Foreign Asset Control (OFAC) sanctions program. 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 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.
• While applicants from all countries are welcome to apply, because of required ongoing compliance with U.S. sanctions and export controls, an applicant’s funding eligibility may need to be reassessed if the applicable laws and regulations change at any time. As a result, even if an applicant is eligible to receive funding at the time the application is reviewed, the applicant’s status may change later in the process or during the course of the grant term.

For more information, visit Chan Zuckerberg Initiative.