PKD Community Engagement Grants

Overview of program goals and scope

The ADPKD Centers of Excellence program is built upon the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team guided by patient navigation services. The program’s mission stands on three pillars: understanding PKD through research, ensuring better care for all individuals with ADPKD, and educating and empowering the community.

The PKD Foundation recognizes the unprecedented need for community-level initiatives, programs, and events. In 2023, the PKD Foundation awarded $40k in community grants to support programs providing services that educate and spread awareness of ADPKD, reaching those who are newly diagnosed, and targeting either health care providers or patients and families living with ADPKD.

Funding is contingent upon designation in the ADPKD Center of Excellence program. Grants provide up to $6,000 in funding for one year.

Program specifics

What types of projects have been funded?

PKD Foundation has funded projects and initiatives that are impactful and measurable, especially with the potential to be sustainable and scalable through future support. Projects were new and existing grant-supported areas and/or pilot initiatives. All funded organizations and institutions must demonstrate a commitment to diversity, equity, accessibility, and inclusion.

The 2023 community grant cycle solicits applications in the following areas:

  • Host a patient educational or awareness seminar
  • Improve underdiagnosis and misdiagnosis of ADPKD among the general chronic kidney disease community.
  • Encourage primary care and non-specialized clinicians to refer patients with ADPKD to specialists at the PKDF Centers of Excellence and Partner Clinics.
  • Collect and address challenges from patients in your community around barriers to accessing local care.
  • Support shared decision-making around dialysis modalities and related barriers.
  • Improve support of preparations for transplant, including early education and the transplant evaluation process, especially for those candidates affected by the race-based calculation to estimate eGFR.
  • Training in diversity, cultural sensitivity, and working with underrepresented groups within the ADPKD community (for example: individuals with disabilities, people of color, and individuals who speak a non-English language)
  • Active outreach initiatives to underrepresented groups within the ADPKD community.
  • Identify the social determinants of health that affect your community the most significantly and identify a plan to assist patients in overcoming those barriers.

Proposal topics are not limited to the above suggestions.

Eligibility Requirements

The Community Engagement grant program was open to team members in the PKD Foundations Centers of Excellence and Partner Clinic program. These grants do not support indirect costs, salary costs for individuals employed on the project, or capital expenses (i.e., computers, furniture, building fixtures). Requests for funds can support participant costs and facilitator/instructor (person providing direct service to participants) expenses.

Grants were required to have at least two investigators: (1) clinician, nurse practitioner, patient navigator, or other care team member, and (2) a patient stakeholder. PKD Foundation encouraged including members of the center’s Patient Advisory Group in the initiative planning process (Centers of Excellence are required to have a Patient Advisory Group; these are optional for Partner Clinics, although encouraged).

Application Review Procedures

The PKD Foundation strives to be transparent related to our decision-making processes. We rely on our COE Advisory Group review committee, who develop recommendations for center designation, as well as the process we use as a Foundation, to make funding decisions.

Funding

Award amounts are justified in each proposal. Each grant awarded was funded for one year. The funds awarded were used solely for the purposes specified in the proposal submitted and approved by PKD Foundation as executed by the investigator and institution in strict compliance with the budget attached to the application.

Reporting requirements

Grantees must submit a final Progress and Financial Report, and are encouraged to present their results at PKDF’s annual Centers of Excellence or PKD Connect Conferences.

Attribution

A stipulation to all awards is appropriate attribution of the PKD Foundation in any publication, news release, presentation, etc. that results from work funded by the award. The PKD Foundation must also receive a copy of the publication and/or news release. This responsibility extends beyond the interval of provided funding.

Awardees are asked to please use language similar to the following: This project was partially funded by a grant from the Polycystic Kidney Disease Foundation, pkdcure.org. The Foundation had no role in care team design, data collection and interpretation, or the decision to submit the communication for publication.

Liability policy & reporting responsibilities

The PKD Foundation serves as a grantor not a sponsor for community engagement projects. The responsibility for liability issues and all reporting requirements including local, state and federal regulations will reside with the employment institution, not the PKD Foundation. 

Page last updated June 2024