Volunteer with us

Volunteers are the heart of the PKD community. Our volunteers ensure that no one faces PKD alone. When you join our volunteer team, your time and efforts will impact the funds raised for PKD research.

We are the only organization in the U.S. solely dedicated to finding treatments and a cure for PKD to improve the lives of those it affects. We do this through promoting fundraising, education, advocacy, support and awareness on a national level, along with direct services to local communities across the country.

If you’re interested in learning more about joining our volunteer team, please contact us at volunteers@pkdcure.org and we will follow up with you.

Whether you are interested in signing up for a one-time, day-of-event opportunity, or you are interested in joining our volunteer leadership, we would love to talk with you! Please submit your volunteer form and a member of our team will follow up with you.

Get involved

Learn about more ways to take action.

PKD Communities

Connect with PKD patients in your area and across the nation.

meet our volunteers

Julia Adams
PKD Connect Ambassador

Greg Mainolfi
Advocacy Champions Network

Volunteer roles

Advocacy Champion

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.

Community Reaction Panel

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. 

Education Advisory Panel

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.

Fundraising Ambassador

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. 

Peer Ambassador

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

The PKD Foundation will recruit Peer Ambassadors in the Spring 2023. If you are interested in volunteering, please complete our Become a Volunteer form.

PKD Connect Ambassador

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:

Atlanta

Baltimore

Connecticut

Denver

Detroit

Houston

Las Vegas

Nebraska

New Orleans

Northeast Ohio

Oklahoma

Phoenix

Salt Lake City

San Francisco

Twin Cities

Western NY

PKD Connect Interpreter

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. 

Registry Patient Advisory Group

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.

Stakeholder Reviewer Panel

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.

Stewardship Ambassador

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 Ambassador

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:

Charlotte

Chicago – Looking for a Co-Walk Ambassador

Indianapolis

Las Vegas

Nebraska

North Texas

Oklahoma

Portland

San Antonio — Recruiting for 2023

South Florida

St. Louis

PKD Connect Peer Mentors

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. 

Now recruiting volunteers!

We currently have openings for Walk Ambassadors and PKD Connect Ambassadors in several local communities.

We are also recruiting for:

  • Community Reaction Panel
  • Stewardship Ambassadors

Click on the volunteer roles to learn more.

Page last updated May 2022

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