Rare As One (Cycle 3)

Funding Agency:
Chan Zuckerberg Initiative

At the Chan Zuckerberg Initiative (CZI), we believe in supporting and leveraging the power of patients to accelerate research and drive progress against rare diseases. That’s why — with continued guidance from patient communities, rare disease experts, and advocacy organizations — we are continuing to lift up the work of patient communities. Through the Rare As One Project, we will scale a model in which patients, researchers, clinicians, and others work together to advance progress against their diseases. 

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.

 

Deadline: Feb. 22, 2024

Agency Website

Eligibility Requirements

  • 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 hereditary disease or diseases that fall into one or more of the following three areas: (i) Channelopathies, a heterogeneous group of disorders resulting from the dysfunction of ion channels located in the membranes of all cells and many cellular organelles; (ii) 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 (iii) 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.

Amount

$800,000

Funding Type

Grant

Eligibility

Faculty

Category

Medical
Medical - Basic Science
Medical - Clinical Science
Medical - Translational

External Deadline

February 22, 2024