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Rare As One Network

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

Agency Type:

Foundation / Corporation

Funding Source:

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Chan Zuckerberg Initiative (CZI)

Deadline Date:

07/23/19 5:00 PM Pacific Time


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Grants to USA nonprofit advocacy organizations led by patients for the development of research networks related to their rare 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 against their diseases. Successful applicants will receive funding, training, community mentorship, and capacity building resources.

Each research community will be led by a patient organization in collaboration with researchers and clinicians. The Rare As One Network will initially focus on helping patient groups build a network of researchers, clinicians, and patients working together to align on the state of the science, the open research questions, and research priorities for their rare disease. The creation of shared research priorities will incorporate the needs of key stakeholders and help optimize research funding.

Prioritization Criteria:
- Need for a Research Network as demonstrated by insufficient activity within the disease area that is dedicated to the formation of shared research priorities.
- Leadership and Organizational Focus that reflect and adequately represent the diversity of the community served.
- Commitment to Collaboration as demonstrated by having a track record of joining (or attempting to join) with other groups to increase impact; awareness of existing complementary efforts and organizations and a vision for resolving any redundancy; and a desire to draw on existing community relationships and/or build new ones.
- Patient Community­-Oriented in connecting with the population affected by the disease and in developing strategies and solutions with input from the community.
- Potential to Advance Science in the disease area field through engagement with the research community and creation of a research network.

For an additional list of evaluation criteria, see:

GrantWatch ID#:

GrantWatch ID#: 186429

Number of Grants:

CZI will provide up to 10 patient organizations with grants.

Estimated Size of Grant:

Each grant will be up to $450,000 total over a period of two years.

Term of Contract:

Awards will be two years in length with a project start date of no earlier than January 2020. Actual start date may vary.

Additional Eligibility Criteria:

Minimum Criteria:
- The applicant is representing a patient­-led organization focused on a rare disease, disorder, or syndrome, or group of closely related rare diseases, disorders, or syndromes, defined as a condition affecting fewer than 200,000 people in the U.S.
- The organization must be 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.
- Applicants selected to participate in the final round of review will be asked to submit valid documentation with their proposal by the deadline. This should include a copy of your most recent IRS determination letter—or the IRS letter of your fiscal sponsor—showing the organization’s tax-­exempt status. If your organization is fiscally sponsored, please also submit the fiscal sponsorship agreement signed between your organization and your fiscal sponsor.
- As part of this application, the applicant must have assembled a team of at least one researcher and at least one clinician to work together with the patient organization to form a research network. This initial “network leadership team” will help build a larger network of researchers, clinicians, and patients.

The researcher and clinician roles must be filled by two separate individuals (as opposed to a single MD­PhD). CZI reserves the sole right to decide if an applicant or applicant organization meet the eligibility requirements.

Women, underrepresented minorities, and organizational leaders representing disease areas that disproportionately impact underrepresented communities are strongly encouraged to apply.

Facebook employees, including employees of any subsidiary Facebook entities, are not permitted to apply for this grant.

Pre-Application Information:

This grant program will accept Letters of Interest starting at 9 a.m. PDT Tuesday, June 11, 2019 until 5 p.m. PDT on Tuesday, July 23, 2019. After an initial round of review, a select set of organizations will be invited to submit a full application. Finalists will be notified in August. Final applications will be due late September 2019.

Key Dates:
- June 11, 2019: Application portal opens at 9 a.m. PT to receive Letters of Interest
- July 23, 2109: Letters of Interest due by 5 p.m. PT
- Late August 2019: Earliest notification for invitation to submit full applications
- Late September 2019: Full applications due
- November 2019: Earliest notification of decisions (subject to change)
- January 2020: Earliest start date of award period (subject to change)

Additional information:

Contact Information:

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

Apply online:

For technical assistance and other questions 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