Rare As One - Cycle 2

Overview

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, through the Rare As One Project, to lift up the work of patient communities and 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 2) Request for Applications (RFA), CZI is inviting patient-led, U.S.-based nonprofit 501(c)(3), rare disease advocacy organizations to apply for a three-year grant opportunity to support the development (or meaningful expansion) of an international, patient-led collaborative research network in the disease area. CZI will provide support to 20 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. Throughout the grant period, CZI will provide grantee organizations with capacity building support, including funding, training, community learning opportunities, and mentorship. In turn, we ask the organizations to share experiences and learnings with one another, and together work to identify how to best address the most pressing needs across a spectrum of rare diseases. Read our Medium post to learn more.

We recognize patient communities as the agents and architects of their own change. We are connecting and partnering with the rare disease community to provide resources and tools for patient communities to be more effective advocates for, and partners in, research. Please visit our website to learn more.

This grant program will accept applications starting at 9 a.m. Pacific Time Tuesday, March 23, 2021 until 5 p.m. Pacific Time on Tuesday, June 2, 2021. If awarded, each grant will be up to $600,000 total costs over a period of three years.

• 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.

For questions about eligibility for this award or the application process, please contact us in advance of the proposal deadline at sciencegrants@chanzuckerberg.com. Deadline extensions will not be granted.

Diversity and Equity: We believe the strongest teams — encompassing ourselves, our grantees, and our partners — incorporate a wide range of backgrounds, lived experiences, perspectives, and voices that guide them to the most important unsolved problems. To enable our work, we incorporate diverse perspectives into our strategy and processes, and we also seek to empower community partners to engage in science. We are committed to building a grant program that fosters diversity and addresses systemic inequities. We are working to build tools and infrastructure and disseminate methods and skills, aiming for conditions in which a diverse range of prospective patient advocates can thrive and grow. Women, those with disabilities, underrepresented racial and ethnic groups, and organizations representing disease areas that disproportionately impact underrepresented or underserved communities are strongly encouraged to apply.

The Chan Zuckerberg Initiative uses SurveyMonkey Apply (SMApply) as its grants management portal. All applications must be submitted through this portal (https://apply.chanzuckerberg.com). SMApply is configured to work best using the Google Chrome browser. It is recommended that you familiarize yourself with this portal well in advance of any deadlines. Deadline extensions will not be granted.

Application specifics:

• Eligibility: Please refer to the above Eligibility section of the RFA announcement. 
• Award Period: Proposals should be three years in duration with a project start date of no earlier than October 1, 2021. Actual start date may vary.
• Budget: $600,000 total costs over three years (inclusive of up to 15% indirect/overhead costs). Indirect costs cannot exceed 15% of direct costs. A budget is not required at the time of application, but will be requested at a later time during the review process if selected as a finalist. The Chan Zuckerberg Initiative will work closely with finalists to arrive at a mutually acceptable budget after review. 

The application consists of the following sections (called tasks in the grants portal): Eligibility, Applicant/Patient Leader, Equal Opportunity/Diversity (optional), Patient-Led Organization, Disease Area Details, Short Answer Questions

• Eligibility: In an effort to ensure your organization meets the eligibility requirements to apply, this eligibility questionnaire must be completed first. Once you have completed the questionnaire and confirmed your eligibility, the rest of the application will become available. It is strongly recommended that you complete the eligibility questionnaire well in advance of the submission deadline. No extensions will be granted.
  • Is your organization a patient-led organization (an advocacy group/disease foundation or organization that represents patients, employs patients in key leadership roles (e.g., Founder, Executive Director, Board of Directors) and is patient-centered in its programming)?
  • Is your organization 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)?
  • Is your organization tax-exempt under section 501(c)(3) of the Internal Revenue Code? Or, does your organization have a valid fiscal sponsor that is tax-exempt under section 501(c)(3) of the Internal Revenue Code?
  • Does your organization have an annual budget of less than $2 million averaged over a two-year period?
• Applicant/Patient Leader: The information entered should be for the Applicant/Patient Leader (i.e. Executive Director, CEO, or head of the organization) who will be taking responsibility for the grant and will be the administrative point of contact for CZI.
  • Name and email (auto-filled): To edit your name or email, please do so in your account information by clicking your name in the upper right corner and clicking My Account in the dropdown menu. 
  • Organization.
  • Title/Position at organization.
  • Please upload a PDF of your resume. 
• Equal Opportunity & Diversity (optional): CZI Science supports the science and technology that will make it possible to cure, prevent, or manage all diseases by the end of this century. Everyone is affected by disease, yet different communities are affected by or experience disease in different ways. Moreover, due to systemic barriers, the scientific enterprise itself is not a place where all voices and talents thrive. We believe the strongest scientific teams — encompassing ourselves, our grantees, and our partners — incorporate a wide range of backgrounds, lived experiences, and perspectives that guide them to the most important unsolved problems. To enable our work, we incorporate diverse perspectives into our strategy and processes, and we also seek to empower community partners to engage in science.We track demographic information associated with applications submitted to CZI in response to our open calls. This information helps us learn from the RFA process, as well as improve our strategies to help ensure people who identify as members of underrepresented or marginalized groups in science are aware of and able to apply to CZI opportunities.Please note that answering all questions below is voluntary, and demographic information will not be used to make final grant funding decisions. All responses will be shared only with limited personnel, who will use that information only for the purposes described in this paragraph.If you have any additional questions about why we ask this, what we do with the data, or to share suggestions for improvement, please reach out to sciencegrants@chanzuckerberg.com. The information below may be entered for the Patient Leader. Please note that completing the below is voluntary, and demographic information will not be used to make final grant funding decisions.
  • What is your race/ethnicity? (optional)
  • What is the year of your last academic degree? (optional)
  • What is your gender? (optional)
  • Are you transgender? (optional)
  • Are you a member of the LGBTQ community? (optional)
  • Do you have one or more disabilities? Please specify (optional)
• Patient-Led Organization:
  • Please enter your Organization’s Name/Street address/City/State/Website/Year established.
  • Will your organization be applying with a fiscal sponsor? (Yes/no) If yes:
    • Fiscal Sponsor Organization Name
    • Fiscal Sponsor street address/City/State/Website
    • Fiscal Sponsor Contact Information
      • First name, Last name, Title/Position, Email.
  • Please enter your organization’s Employer Identification Number (EIN), as assigned by the Internal Revenue Service in the 9-digit format (XX-XXXXXXX; 10 characters total). If you are a fiscally sponsored organization, please enter the Tax ID of your fiscal sponsor.
  • Please list the name and contact information for the person to discuss press releases and media.
    • First name, Last name, Title/Position, Email.
  • Please indicate the number of employees at your organization, including the Applicant/Patient Leader and then complete the table with the following information for each employee (up to a maximum of 10). Please include the Applicant/Patient Leader in this section. You may need to use the scroll bar at the bottom of the table to scroll right to view and to complete all fields. Alternatively, you can tab to move through and complete the fields. For each employee, please enter:
    • Name, Title/Role, Full-time/Part-time, Paid/Unpaid, Years in Role 
  • Please share your organization’s mission/mission statement (maximum of 75 words).
  • Please mark all regions in which your organization is active. Check all that apply.
    • Local, U.S., North America, South America, Africa, Asia, Europe, Australia
  • Please describe which portions of the disease population your organization represents.
    • All, Pediatric only, Adult only, Other (please specify)
  • Are there other advocacy organizations working directly in the disease area your organization represents? (Yes/No) 
    • If Yes: 
      • Please list the names of other advocacy organizations directly involved in the disease area your organization represents. 
      • Please describe how your organization differentiates itself from these other organization(s) (i.e. in terms of mission/structure, involvement in research, services provided, etc.), how your organization contributes to or complements the work and efforts of other organizations, and how your organization ensures that its work is not duplicative (maximum of 150 words).
  • Budget:
    • Please provide your total operating budget for the current fiscal year in U.S. dollars. 
    • Please indicate what percentage of your budget is currently allocated to research (including funding research directly, the development of research-enabling infrastructure, etc.). 
• Disease Area Details: This section should be completed on behalf of the applicant organization’s disease area of focus.
  • Please provide the name of your organization’s rare disease, disorder, or syndrome, or group of closely related rare diseases, disorders, or syndromes of focus.
  • Please provide a published reference (link to a peer-reviewed paper or website) for your disease area or indicate if no references are available.
  • Please indicate the cause of the disease your organization focuses on. If not known, please mark unknown. Check all that apply:
    • Autoimmune/Autoinflammatory diseases, Cancer, Environmental diseases, Genetic diseases, Infectious diseases, Nutritional diseases, Other (please specify), Unknown
  • Please indicate which organs and/or tissues are affected by the disease your organization focuses on. Check all that apply:
    • Blood, Brain, Connective tissue, Ear/Nose/Throat, Eye, Heart, Intestines, Liver, Kidney, Lung, Pancreas, Skin, Stomach, Other (please specify), Unknown
  • Please indicate which systems are affected by the disease your organization focuses on. Check all that apply:
    • Circulatory system, Digestive system, Endocrine system, Integumentary/Exocrine system, Lymphatic system/Immune system, Metabolic system, Muscular system, Nervous system, Renal/Urinary/Excretory system, Reproductive systems, Respiratory system, Skeletal system, Other (please specify), Unknown
  • Please indicate the sex(es) of those affected by the disease. Check all that apply:
    • Male, Female, Both male and female, Intersex, Unknown
  • Please select the age group(s) affected by symptoms of the disease. Check all that apply: 
    • Pre-birth, Infancy (Ages 0 to 1), Early childhood (1+ to 5), Middle childhood (6 to 11), Teen (12 to 17), Adult (18 to 65), Elderly (65+), Unknown
  • What is the average age of diagnosis of an individual diagnosed with the disease? If this answer is dependent on sub-type, please explain (50 characters).
  • What is the average life expectancy (age) of an individual with the disease? If this answer is dependent on sub-type, please explain (50 characters).
    • ____ years, Unknown 
  • Please indicate, if known, the average length of time that passes between initial symptoms of the disease appearing and before a diagnosis is obtained. If unknown, please mark unknown. If this answer is dependent on sub-type, please explain (50 characters).
    • Less than one year, 1 to 5 years, 5+ to 10 years, 10+ years, Unknown
  • Please indicate the typical method(s) of diagnosis of the disease. Check all that apply: 
    • Genetic testing, Clinical diagnosis, Imaging, Other (please specify)
  • To the best of your knowledge, are the majority of those living with the disease currently diagnosed?
    • Yes.
    • No. If no, please describe what percent of the affected population is believed to be undiagnosed. Are certain groups/subpopulations within the disease area undiagnosed? Does this vary by geography? (maximum of 75 words) 
    • If unknown, please mark unknown. 
  • Please indicate, if known, the approximate number of individuals that have received an accurate diagnosis of the disease. Please indicate if this number refers to the worldwide disease population or U.S. only. If unknown, please mark unknown. 
  • Please indicate the prevalence of the disease (i.e. the approximate number of people believed to have the disease). Please indicate if this number refers to the worldwide disease population or U.S. only. If unknown, please mark unknown.
  • Please indicate the incidence of the disease (i.e. the approximate number of new cases of the disease identified over the course of a year). Please indicate if this number refers to the worldwide disease population or U.S. only. If unknown, please mark unknown.
  • Please describe if there are global regions, ethnic, or racial groups in which there are higher than average prevalence/incidence rates (maximum of 75 words).
  • Please tell us about the typical experience of patients with the disease, the most common symptoms, any treatment options, the progression of the disease, and how the disease affects quality of life (maximum of 150 words).
• Short Answer Questions:
  • Need For A Patient-Led Collaborative Research Network: The overall goal of the grant is to help organizations develop or build upon a patient-led collaborative research network in their disease area in order to better address diagnostic challenges and advance research towards treatments and cures. In order to help us understand the need for a patient-led research network in your disease area, please answer the following questions:
    • Please describe the current state of the research community in your organization’s disease area of focus and why there is a need for the development or expansion of a research network (maximum of 200 words).
    • Please describe the role that your organization currently plays in the research community (maximum of 150 words).
    • How would you describe what a patient-led collaborative research network is (maximum of 100 words)?
    • How does your organization envisage developing/expanding a patient-led research network (maximum of 150 words)?
    • What role do you see the patient voice playing in the research agenda, and how would you work to incorporate it (maximum of 150 words)?
    • How would your organization approach engaging the research community and patients to develop and execute on shared research priorities (maximum of 150 words)?
  • Potential Impact Of A Patient-Led Research Network In Improving Research and Diagnosis:
    • Please describe the diagnostic challenges in the disease area, including any systemic barriers to diagnosis (i.e. diagnostics not covered by insurance, lack of access to expert centers, etc.) and any scientific barriers (maximum of 200 words).
    • Please describe—to the extent known—current scientific research priorities and areas of focus with regard to diagnosis in the disease area, and how the development of a patient-led collaborative research network could facilitate progress in those areas (maximum of 150 words).
    • Please describe how you think the development/expansion of a patient-led collaborative research network would advance research more broadly and ultimately contribute to improved understanding of the disease and the development of treatments and cures in the disease area your organization represents (maximum of 200 words).
    • Please describe any challenges specifically related to representation or equity that affect research progress in your disease area and how a patient-led collaborative research network could address them (maximum of 150 words).
  • Leadership Strengths:
    • Please describe your motivation for creating and/or leading this organization (maximum of 200 words).
    • Please describe why you and your team are positioned to lead the development of a research network for your disease area. This could include your ability to recruit others to join your cause, any previous experiences that support your ability to build an organization and develop a research network, the representation of individuals from groups that are underrepresented in your disease area in your leadership team, and the combined motivations and strengths of your team that will be relevant to this work (maximum of 200 words).
  • Commitment to Collaboration:
    • Please describe the role that you see collaboration playing in strengthening your organization’s work (maximum 150 words).
    • Please describe two key collaborations your organization has engaged in and their impact (maximum 200 words).
  • Community Representation:
    • Please describe how your organization reflects the interests of the patient community and is inclusive of and responsive to the patient community in its governance, outreach, and other organizational activities (maximum of 200 words).
    • Please describe what steps you are taking as an organization to improve your efforts with regard to diversity, equity, and inclusion. This could  include efforts to diversify your leadership team, and your current or planned efforts to reach and serve patients, families, and others affected by the disease who identify as members of groups that are underrepresented or marginalized in science (maximum of 200 words).
  • Organization Needs:
    • Please describe what you see as your organization’s greatest challenges and most pressing needs (maximum 200 words).
    • Please describe how participation in this program would help you address those challenges/needs (maximum 200 words).
    • Please describe in what ways you think that your organization would benefit from engagement with the other organizations in the RAO Network (maximum 150 words).

QUESTIONS?

For administrative and programmatic inquiries pertaining to this RFA, please contact sciencegrants@chanzuckerberg.com. For technical assistance with SMApply, please contact support@smapply.io or while logged into SMApply, click on the information ”i” link in the upper right corner and submit a help request ticket.

The Chan Zuckerberg Initiative’s core values center around people, technology, collaboration, and open science. We adhere to those values in both proposal selection and evaluation of progress. CZI will evaluate all applications and will seek independent expert review. As needed, finalists may be invited for a video interview with CZI staff and/or advisors between July 15-August 4, 2021. CZI reserves the sole right to decide if an applicant or applicant organization meets the eligibility requirements. CZI reserves the sole right to not recommend the funding of any applications. CZI does not provide feedback on decisions for unfunded proposals.

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.

• Funds from this award are intended to support rare disease organizations in the development of patient-led research networks. Grants are made to organizations and reasonable flexibility on how these funds are utilized is allowed, provided that the funds are used to support the development and maintenance of a research network for the organization’s disease area of focus. The funds may not be used to directly fund research, although they may be used to develop research-enabling infrastructure (i.e. biobanks, data collection efforts, etc). 
• For awarded projects, financial statements and progress reports will be due at the conclusion of each grant year. Specific deliverable requirements will be outlined in the award notification. 
• Grantees of funded projects will be asked to participate in regular trainings and events (which may be in person or virtual). Travel support for any in-person meetings will be provided by CZI separately from the requested grant funds. 
• Grantees may obtain funding from other funding sources, provided that there is no conflict with meeting the terms of the CZI award.
• Ethical conduct: CZI advocates the highest standards for the ethical conduct of research. In addition to requirements of their own countries, grantees must adopt procedures for the use of animals in research and for the ethical treatment of human subjects and tissue donors, including obtaining their or their appropriate proxy’s written informed consent. CZI regards the policies of the National Institutes of Health as a strong model for such procedures.
• Data, publication and dissemination: Although it may not be the specific goal of this RFA or the project funding, CZI seeks to accelerate scientific discovery and collaboration. In many cases, this is accomplished by supporting a sharing and publication policy for open and rapid dissemination of results, including methods, data and reagents, and software that maximizes accessibility and reuse. Situations where this type of sharing is not possible (e.g.personally identifiable information) will be considered. If you have specific questions, please contact us at sciencegrants@chanzuckerberg.com.
• Unused research funds may be carried over to the following year, and requests for no-cost extensions will be considered at the end of the overall project period and upon receipt of an annual report. 
• Indirect costs cannot exceed 15% of direct costs. Indirect costs may not be assessed on capital equipment or subcontracts, but subcontractors may include up to 15% indirect costs of their direct costs.
• Applications selected through this process will either be funded by the Chan Zuckerberg Initiative Foundation (CZIF) or recommended for funding through the Chan Zuckerberg Initiative Donor-Advised Fund (CZI DAF) at the Silicon Valley Community Foundation (SVCF).

All submitted applications will be kept confidential, except (1) as necessary for our evaluation or to comply with any applicable laws; and (2) to the extent that the application is made public or available to others without a duty of confidentiality through no fault of CZI. Notwithstanding, successfully funded proposals may be made publicly available and/or shared with other grantees or collaborators. Unfunded proposals will remain confidential as provided herein; however, information, including brief summaries of the proposed projects, project metrics, and the types of organizations that have applied for funding, may be made publicly available in aggregate form. Application materials will not be returned to applicants.