Volunteer with us

The Advocacy Champion Network (ACN) is vital to raising awareness of PKD and increasing research dollars to bring treatments and therapies to patients and to provide the best care for those who are reliant on dialysis or a kidney transplant to survive.

By joining others and sharing their experience, the ACN will help to further legislation, regulation, and federal funding opportunities to improve the lives of everyone in the PKD community.

The PKD Foundation recruits ACN members in the fall. If you are interested in volunteering, please complete our Become a Volunteer form.

The PKD Foundation Community Reaction Panel provides feedback on pre-determined topics of interest to Industry Alliance partners and PKD Foundation programs and services. The panel consists of patients and caregivers with varied experiences across the continuum of disease progression and includes experience with ADPKD and ARPKD.

If you are interested in volunteering, please complete our Become a Volunteer form. 

Chair

The Education Advisory Panel Chair will be a nephrologist and work with PKDF staff to provide guidance to the Education Advisory Panel to create recommendations for the PKDF Education program. Recruitment for this position occurs in the fall.

Member

The Education Advisory Panel member actively contributes to the development of recommendations for the PKDF Education program. The group consists of one each of the following: ADPKD-focused nephrologist, ARPKD-focused nephrologist, radiologist, pain specialist, renal nurse, patient, ADPKD caregiver, and an ARPKD caregiver. Recruitment for these positions occurs in the fall.

The Fundraising Ambassador plays an important role in the local PKD community by identifying local fundraising opportunities and organizing events. With support from PKD Foundation staff, their contribution will facilitate fundraising that supports the mission of the PKD Foundation.

If you are interested in volunteering, please complete our Become a Volunteer form. 

The Outreach Ambassador program is meant to build new bridges between the PKD Foundation and previously underserved communities. The Outreach Ambassadors Program will also guide communities of color through the Foundation’s resources on disease management, treatment options, and navigating health care systems.

If you are interested in volunteering, please complete our Become a Volunteer form.

PKD Connect Ambassadors play a vital role in providing local support for PKD communities across the United States and serve as the frontline for individuals new to the PKD Foundation. In this role, volunteers provide educational opportunities and support to their local PKD community while connecting individuals to PKDF programs and services as appropriate.

Currently recruiting in the following communities:

Chicago

Northeast Ohio

Houston

Sacramento

Birmingham

Indianapolis

Iowa

New York City

PKD Connect Interpreters will translate emails and assist with returning phone calls on an as-needed basis. Volunteers will connect individuals with PKD Foundation programs and services as appropriate and assists with building a sense of community for non-English speaking patients and families.

If you are interested in volunteering, please complete our Become a Volunteer form. 

The Registry Patient Advisory Group will provide oversight and guidance on the development and execution of the ADPKD Registry. A Patient Advisory Group will serve as a working group under the larger steering committee and meet quarterly. More information on the Registry program here: pkdcure.org/registry

If interested in serving on this panel, email registry@pkdcure.org.

Stakeholders will serve on the larger Grant Review Committee and incorporate the views of persons affected by PKD into the PKDF research grant review process. Stakeholders will read and evaluate research study applications for relevance to the PKD community’s needs and concerns and actively participate in peer review panel discussions. Applications for stakeholder reviewers opens in the fall. Learn more.

The Stewardship Ambassador is vital in helping the PKDF share gratitude with donors who support the foundation through monetary donations. The Stewardship Ambassador will thank donors through various types of communication; phone calls, emails, hand-written notes, etc. 

If you are interested in volunteering, please complete our Become a Volunteer form. 

Walk for PKD Ambassadors serve an important role in their community. They’re responsible for planning and executing their local Walk for PKD with support from PKD Foundation staff. This volunteer role raises important financial support and plans an event that brings the local PKD community together. Their contribution will help to fulfill our vision to #endPKD.

We are recruiting for the following communities:

Chicago – Co-Walk for PKD Connect Ambassador

Connecticut

Denver

Detroit – Co-Walk for PKD Connect Ambassador

Pittsburgh – Co-Walk for PKD Connect Ambassador

PKD Connect Peer Mentors provide resources, guidance, motivation, and emotional support to an individual impacted by PKD. Peer mentors are familiar with the difficulties associated with polycystic kidney disease (PKD) and are open to sharing their own experience with PKD to support and encourage others.

If you are interested in volunteering, please complete our Become a Volunteer form.