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Grants to USA Nonprofits Led By Patients to Develop Collaborative
Research Strategies and Networks Related to Eligible Diseases

Agency Type:

Foundation / Corporation

Funding Source:

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Chan Zuckerberg Initiative (CZI)

Deadline Date:

06/02/21 5:00 PM Pacific Time

Description:

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Grants to USA nonprofit organizations led by patients for the development of research networks related to eligible diseases. Funding is intended to create and develop a model in which researchers and clinicians work together with patients to explore new research strategies and approaches with the goal of advancing progress on rare diseases. Successful applicants will receive funding, training, community learning opportunities, and mentorship.

CZI will provide support to patient-led organizations to build a network of researchers, clinicians, and patients working together to align on the state of the science, identify the open research questions, and develop shared research priorities—putting emphasis on addressing diagnosis-related research challenges, and directing attention to the diversity of needs of the full patient community

Prioritization Criteria:

While the application will be reviewed in full, and multiple factors will be evaluated, applications will be prioritized in the review process based on the following criteria:

  • The patient-centered nature of the organization, as demonstrated by how it represents, engages, and reflects the patient voice, and is representative and inclusive of the diversity of the patient community in its approach.
  • The ability of the leadership team to lead the development of a patient-led research network, as demonstrated by the motivation, commitment, and ability of the patient leader; current and/or planned engagement with the research community; the inclusion of individuals from underrepresented groups in the leadership team; and the combined strengths of the leadership team that will be involved in this work.
  • The need for a patient-led research network, as demonstrated by insufficient activity dedicated to the formation of shared, patient-centered research priorities within the disease area and the potential of a research network to advance scientific understanding and progress in the disease area.
  • The potential to address challenges related to diagnosis through the enhanced capacity and work of the patient organization and the development/expansion of a patient-led research network.
  • The commitment of the organization to centering diversity, equity, and inclusion throughout all its work, including current or planned efforts to reach and serve patients, families, and communities of color affected by the disease, develop/expand the research network, identify shared priorities, and address scientific and systemic barriers to diagnosis.
  • The potential of the organization to benefit from this opportunity, as demonstrated by the organization’s strengths, needs, and collaborative orientation.

GrantWatch ID#:

GrantWatch ID#: 186429

Number of Grants:

CZI will provide up to 20 patient organizations with grants.

Estimated Size of Grant:

Budget: $600,000 total costs over three years (inclusive of up to 15% indirect/overhead costs).

Term of Contract:

Award period and start date: Awards will be three years in duration with a project start date of no earlier than October 1, 2021. Actual start date may vary.

Additional Eligibility Criteria:

Eligibility:
- Applicant organizations must be patient-led 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.
- Applications must be submitted by organizations that are tax-exempt under section 501(c)(3) of the Internal Revenue Code OR have a valid fiscal sponsor that is tax-exempt under section 501(c)(3) of the Internal Revenue Code.
- Applicant organizations must be focused on a rare disease, disorder, or syndrome, or group of closely related rare diseases, disorders, or syndromes (defined in the U.S. as a condition that affects fewer than 200,000 people).
- Applicant organizations must have an annual budget of less than $2 million averaged over a two-year period.
- Facebook employees, including employees of any subsidiary Facebook entities, as well as employees of Chan Zuckerberg Initiative, LLC, are not permitted to apply.

Pre-Application Information:

Key Dates:
- March 23, 2021: Application portal opens
- June 2, 2021: Applications due by 5 p.m. Pacific Time
- July 21 - August 4, 2021: Video call interviews of finalists, as needed
- September 2021: Earliest notification of decisions (subject to change)
- October 1, 2021: Earliest start date of award period (subject to change)

Additional information:
https://cziscience.medium.com/strengthening-rare-disease-communities-570dca9c4310

Contact Information:

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

Apply online:
https://apply.chanzuckerberg.com/

For administrative and programmatic inquiries, or other questions pertaining to this RFA, please contact sciencegrants@chanzuckerberg.com.

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

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