Community Meeting Toolkits

Meeting Planner

Meeting Purpose

One of the biggest challenges PKD patients face is finding the right healthcare providers. In fact, “Where do I find a nephrologist that understands PKD?”, is one of the most often asked question we receive from patients and caregivers. PKD Foundation Centers of Excellence (COE) and Partner Clinics provide a higher level of care to patients with ADPKD.

The Program’s Mission

• Ensuring better care for all individuals with ADPKD
• Understanding ADPKD through research
• Educating and empowering the community

The purpose of this meeting is to connect the local PKD community with the Center of Excellence or Partner Clinic in their area. In addition to finding a nephrologist, PKD patients may also need access to other specialists. COEs provide comprehensive care with the support of an integrated healthcare team. Let’s meet local experts and learn about the COE or Partner Clinic in your area!

Meeting Preparations:

• Reach out to the Patient Navigator at your local clinic and request to arrange a virtual Meet & Greet. Sample email template provided below. Please copy nicoleh@pkdcure.org on all communications.
• Once date, time, location, and local speakers are confirmed, please complete our Event Submission Form. Make sure to inform speakers if you would like to have a Q & A session ahead of the meeting!
• Need a refresher on the steps involved in the Community Meeting process? Review this training session.
• Once PKDF receives the form, we will build the registration page and reach out to the local speakers to complete the required forms.
• We will set up a practice session to ensure everyone joining the call is familiar with Microsoft Teams.

Meeting agenda

Welcome and introductions

• Welcome everyone as they arrive / sign into a virtual meeting.
• Introduce yourself and community volunteers attending the call.

PKDF Updates

• Take a moment to provide a brief update from PKDF and about local activities.

Discussion topic: Introducing your local COE / Partner Clinic

Provide a brief introduction to PKDF COE program

• Patient-focused, comprehensive care with the coordination and support of an integrated healthcare team.
• Access to top ADPKD experts, leading research, clinical studies, and new therapies.
• A network for nephrologists, specialists and other providers for referrals, partnerships, and mentoring.
• Navigate to PKDF COE web page: Centers of Excellence

Introductions

• Introduce Patient Navigator
• Patient Navigator introduces each clinician or researcher in attendance.
• Center staff members introduce themselves and share about their role at the clinic.

Q & A with the clinic (Clear this with clinic staff ahead of the meeting)

• Open the meeting to questions from the community attendees
• Bests practices for managing Q & A
• Ask participants to remain on mute for Q & A
• Individuals can raise their hand when they have a question or unmute depending you facilitators comfort level

Share resources

• Centers of Excellence
• Clinical Trials
• ADPKD Registry
• ADPKD Patient Handbook

Take Action

• Make sure all meeting attendees are signed up to receive PKD News and have a patient handbook.
• Watch Communicating with your health care team

Engagement ideas

• After the meeting, follow up with all attendees and provide links to resources discussed during the meeting, including Communicating with your health care team recording.

Templates – Sample email communications to clinic

• All emails should be sent from your volunteer email account.
• Please CC nicoleh@pkdcure.org

Introduction email to Patient Navigator or center contact:

Email subject: Meet & Greet

Hello ,

My name is and I am a PKD Foundation volunteer in . In my volunteer role, I support our local PKD community and provide opportunities for support and education. I would like to organize a virtual Meet & Greet with health providers at on <day, date, time or provide a date range to allow for flexibility>.

The purpose of this meeting is to introduce our local PKD community to and providers patients may meet when visiting the local clinic. Our speakers should be prepared to introduce themselves and share their role in patient care (5-10 minutes). Additional information specific to this clinic that would be helpful to patients would be welcome and power point presentations are not required. If approved by the providers joining us, we would like to provide time, after introductions, for a Q & A session with attendees. Ideally, our speakers would include several members of a health care team such as a nephrologist, transplant nephrologist or transplant coordinator, nurse practitioner, dietitian, social worker, etc.

I would welcome the opportunity to answer any questions you have or provide additional details.

Thank you for considering this request,

Confirmation email – send to clinic contact once details are confirmed

Hello

Thank you for confirming the details for our Meet & Greet. We are very excited to offer this opportunity to the community. Nicole Harr is copied here and will be following up with PKDF Conflict-of-Interest form and speaker agreements.

Please feel free to contact us with your questions.

Let’s promote you meeting!

• PKDF will send 2 blast emails to the local community distribution list.
• It is always helpful to send a save the date email to individuals that have registered for previous local meetings.
• Always use your volunteer email when communicating with constituents.
• Use the registration list spreadsheet available in One Drive.

Save the Date Email

Please save the date and plan to join us on for a Meet & Greet with . Meet health care providers and learn more about the services provided at . We hope to see you there!

Please RSVP and join us!

Sample Facebook post

Join us on for a Meet & Greet with health care providers at . There will be time for Q & A so bring your questions!

Add Registration link to post

Thank you for using our Toolkit, please share your feedback.

Toolkit Overview

I Have PKD — Now What? is a guided community discussion designed to support individuals who are newly diagnosed with PKD, as well as their family members and care partners. The goal is to help participants feel informed, supported, and connected to resources and community—so no one feels alone after a diagnosis.

This toolkit can be used:

• As a peer-led support meeting
• As a framework for a guest speaker
• In virtual or in-person settings

This discussion focuses on connection, shared experience, and awareness of available resources.

Learning Objectives

By the end of the meeting, participants will:

• Feel less alone after a PKD diagnosis
• Become familiar with PKD Foundation resources and support options
• Learn where to find PKD care, research opportunities, and education
• Identify one or more next steps they can take following the meeting

Who This Toolkit Is For

• Individuals newly diagnosed with PKD
• Family members and care partners
• Community members seeking information and connection

Preparation (Before the Meeting)

Optional preparation:

• Review key PKD Foundation resources to share
• Prepare brief PKD Foundation updates or announcements

Optional guest participants:

• A community member willing to share their PKD journey
• Someone who has participated in a clinical study or trial

Suggested Agenda (60 Minutes)

1. Welcome & Introductions (10 minutes)

• Welcome participants as they arrive or log in
• Introduce yourself and any community volunteers or speakers
• Optional: Invite participants to share their name and connection to PKD

2. PKD Foundation Updates (5 minutes)

• Share brief updates or announcements from the PKD Foundation
• Highlight available support and education resources

3. Discussion Topic: I Have PKD — Now What? (30 minutes)

You’re Not Alone

Invite participants to share (as they feel              comfortable):

• A little about their PKD journey
• How they felt after receiving their diagnosis

Acknowledge that receiving a PKD            diagnosis can feel overwhelming, and that      community support can make a difference. 

Finding Information and Support

Introduce the idea that learning about PKD happens over time. Share and briefly point participants to PKD Foundation resources, including:

• Find a Care Center
• Clinical Trials
• ADPKD Registry
• PKD Life Magazine
• Peer Mentoring

Volunteers may choose to briefly describe these resources and / or share links in the meeting chat for virtual meetings.

4. Resources to Share (10 minutes)

Highlight additional tools and materials, such as:

• PKD Foundation patient handbook
• PKD Foundation Resource Library
• Handouts
  • About PKD
  • Join Your Community
• Webpages
  • Kidney 101
    • https://pkdcure.org/about-the-disease/adpkd/kidney-101/
  • Newly Diagnosed
    • https://pkdcure.org/about-the-disease/newly-diagnosed/
  • Welcome to your PKD Community
    • https://pkdcure.org/get-connected/community/

Encourage participants to explore resources at their own pace.

5. Take Action: Next Steps After Diagnosis (10 minutes)

Invite participants to choose one or more actions:

• Review the patient handbook
• Explore PKD Foundation resources online
• Consider joining the ADPKD Registry
• Write down questions to discuss at a future appointment

Optional closing question:

• What’s one thing you’ll look into or do after today’s meeting?

Optional Engagement Ideas

• Watch the PKD Basics webinar during the meeting or share the link in advance
• Invite participants to try a recipe from the Cooking Well Cookbook and share tips
• Invite a community member with clinical trial experience to share their story
• Walk through the PKD Foundation Resource Library and demonstrate how to search
• Follow up after the meeting with links to resources discussed

Disclaimer

The information shared during this meeting is for general educational purposes only and does not replace medical advice, diagnosis, or treatment. Participants should consult qualified health care professionals who are familiar with their individual medical conditions and needs.

Thank you for using our Toolkit, please share your feedback.

Meeting Planner

Join our community conversation about the living kidney donor process. Hear from community members, recipients and donors, about their living kidney donor experiences. We will share PKD Foundation resources about transplantation.

Preparation:

• Invite living kidney transplant recipients and their donor to share their journey to transplant during the meeting.
• Collect pictures to create a slide show.
• Nicole will create the slide show and share it with the community email account.
• Slide show can run as attendees are signing in or can be used to introduce the next speaker

Meeting agenda

Welcome and introductions

• Welcome everyone as they arrive / sign into a virtual meeting.
• Introduce yourself and community volunteers attending the call.

PKDF Updates

• Take a moment to provide a brief update from the PKD Foundation

Discussion topic: Conversations About Living Donation

• No one feels alone
• Living kidney recipients / donors share their story
• Encourage meeting attendees to introduce themselves and share a little about their PKD journey

Share resources

• Guide to Transplantation and Living Donation
• Resource Library | Search transplantation
• ADPKD Registry
• PKD Life

Take action

• Make sure all meeting attendees have a patient handbook.
• At the end of the meeting, add questions to the chat that you should ask the transplant team when preparing for transplant evaluation.

Engagement ideas

• Watch Transplantation From Evaluation to Surgery during the meeting or share ahead of the meeting
• Share the PKD Foundation resource library during the meeting and help attendees filter and search for resources.
• After the meeting, follow up with all attendees and provide links to resources discussed during the meeting.
• Add the slide show to the community web page.

Thank you for using our Toolkit, please share your feedback.

Meeting Planner

Sharing your PKD diagnosis with others can be difficult. PKD can affect multiple generations in the same family and with each diagnosis, the question of how to talk to others about PKD comes up. Share your experiences and hear from others about how they have managed sharing information about a PKD diagnosis with others.

Preparation:

• Invite 2-3 community members to start the conversation by sharing an experience they have had when sharing a PKD diagnosis or a health update.
  • Someone that has shared a PKD diagnosis with a family member (spouse, parent, sibling).
  • Someone that has shared a PKD diagnosis with their child / children.
  • Someone that has shared a health update with their colleagues at work

Meeting agenda

Welcome and introductions

• Welcome everyone as they arrive / sign into a virtual meeting.
• Introduce yourself and community volunteers attending the call.

PKDF Updates

• Take a moment to provide a brief update from the PKD Foundation

Discussion topic: Talking About PKD

• Introduce your first guest speaker and have them share their unique experience talking about PKD.
• Remind attendees to use the chat to comment / ask questions anytime.
• Allow a few minutes for comments and questions.
• Follow steps above and introduce remaining speaker(s).
• Open the meeting up for comments and / or questions from all attendees

Share resources

• Patient handbook
• How to talk to children about PKD video
• PKD Life
• Let’s Talk About PKD

Take Action

• At the end of the meeting, have everyone put their #1 tip for talking about PKD or something they learned during the meeting into the chat. Collect these comments and send them to meeting attendees.

Engagement ideas

• Share resource to view ahead of the meeting, Talking about PKD – patients and caregivers share experiences talking with friends and family video
• After the meeting, follow up with all attendees and provide links to resources discussed during the meeting.

Thank you for using our Toolkit, please share your feedback.

Meeting Planner

Your voice is vital to raising awareness of PKD and it is as simple as sharing your PKD journey! During this meeting we will learn more about the PKD Foundation’s legislative priorities and how advocacy efforts are raising awareness of PKD, increasing research dollars and furthering legislation that impacts the lives of those impacted by PKD.

Meeting agenda

Welcome and introductions

• Welcome everyone as they arrive / sign into a virtual meeting.
• Introduce yourself and community volunteers / speakers attending the call.

PKDF Updates

• Take a moment to provide a brief update from the PKD Foundation

Discussion topic: Advocacy and You: Sharing your Voice

• Why is advocacy important? Please share experiences with PKDF advocacy activities such as Virtual Advocacy Day, Recess visits, Advocacy Alerts.
  • Meeting with your members of Congress can make a significant difference.
  • Sharing your journey with PKD raises awareness of the needs of the PKD community
• Legislative priorities
  • Increase funding for PKD research to make available new treatments to patients.
  • Ensure that PKD patients receive adequate, appropriate, affordable and sustained access to health care throughout the course of life.
  • Influence and improve regulatory processes to ensure PKD therapies are produced efficiently and that they are safe, effective and available to all PKD patients.
  • Engage and empower the patient voice in policymaking, drug development and regulatory decision-making.

Share resources

• Learn more about advocacy
• Advocacy tools & resources
• PKDF Advocacy 101 (2022 PKDCON recorded session)

Take Action

• Sign up for advocacy alerts
  • Send advocacy alert link to friends and family – everyone can participate

• Help us ensure that we have advocate representation in all states!
  • Join the ACN! Complete our Become a Volunteer form to be notified during recruitment

Engagement ideas

• Watch PKDF Advocacy 101 recording, at the beginning of your meeting. Encourage discussion around how each meeting attendee might join PKDF’s advocacy efforts.
• Tour PKDF advocacy pages at our site during the meeting
• If you have an ACN member in your community, invite them to share their experience – Nicole can help you invite a guest speaker.

Thank you for using our Toolkit, please share your feedback.

Meeting Planner

Figuring out how to navigate questions and concerns after transplant can be overwhelming. Can I eat at my favorite restaurant? Can I travel across time zones? How do I keep up with my medication schedule? These are just some of the questions that may come up. Let’s hear from transplant recipients enjoying life to the fullest after a kidney transplant.

Preparation:

• Invite kidney transplant recipients to share their experiences with everyday activities such as travel, managing medications and labs around a busy schedule, eating out in restaurants, etc.
• Collect pictures to create a slide show.
  • Nicole will create the slide show and share it with the community email account.
  • Slide show can run as attendees are signing in or can be used to introduce the next speaker

Meeting agenda

Welcome and introductions

• Welcome everyone as they arrive / sign into a virtual meeting.
• Introduce yourself and community volunteers attending the call.

PKDF Updates

Take a moment to provide a brief update from the PKD Foundation

Discussion topic: Living your best life post-transplant

• No one feels alone
• Living kidney recipients share their story
• Encourage meeting attendees to introduce themselves and share a little about their PKD journey

Share resources

Resource Library | Search post-transplant

• Transplantation: from evaluation to transplant surgery recording
• Understanding Lab Results
• Managing nutrition as dietary needs change from pre-dialysis to post transplant
• Post-transplant – What to expect
• PKD Life
• Peer Mentoring Program

Take Action

• Sign up for a peer mentor
• At the end of the meeting, add questions to the chat that you should ask the transplant team regarding your specific needs post-transplant.

Engagement ideas

• Watch Living your best life post-transplant recording during the meeting or share ahead of the meeting
• Invite a transplant coordinator to talk about clinic visits post-transplant. How often, remote clinic visits, preparation for a trip, etc.
• Invite a renal dietician to share tips for food safety.
• Share the PKD Foundation resource library during the meeting and help attendees filter and search for resources.
• After the meeting, follow up with all attendees and provide links to resources discussed during the meeting.
• Add the slide show to the community web page.

Thank you for using our Toolkit, please share your feedback.

Toolkit Overview

Be YOUR Own Best Advocate is a guided community discussion focused on helping people living with PKD—and those who support them—feel more confident speaking up, asking questions, and partnering with their health care team.

This toolkit can be used:

• As a peer-led support meeting
• As a framework for a guest speaker
• In virtual or in-person settings

This discussion is designed to encourage conversation and shared experiences.

Learning Objectives

By the end of the meeting, participants will:

• Understand what self-advocacy means in a health care setting
• Recognize common barriers to self-advocacy
• Learn practical strategies to communicate more effectively with their health care team
• Identify at least one action they can take before their next appointment

Preparation (Before the Meeting)

Optional preparation:

• Review You Have Been Diagnosed with PKD, Now What?

Identify local resources to share (e.g., Centers of Excellence, patient navigators)

• Prepare brief PKD Foundation updates or announcements

Optional guest speakers:

• Patient navigator
• Social worker

Suggested Agenda (60 Minutes)

1. Welcome & Introductions (10 minutes)

• Welcome participants
• Introduce yourself and any co-facilitators or speakers
• Optional: Invite participants to share their name and connection to PKD

2. PKD Foundation Updates (5 minutes)

• Share brief updates, announcements, or upcoming events
• Highlight available patient resources

3. Discussion Topic: Be YOUR Own Best Advocate (30 minutes)

What Is Self-Advocacy?

Invite participants to share:

• What does self-advocacy mean to you?

Definition to share (if helpful):

• Advocate (verb): to support or speak up for
• Self-advocacy: representing your own needs, questions, and priorities

Sharing Experiences

Use one or more prompts:

• When have you successfully advocated for yourself or a loved one?
• When do you wish you had spoken up?
• What helped—or made it harder—in those moments?

Barriers to Self-Advocacy

Invite reflection on common challenges, such as:

• Forgetting questions during appointments
• Not knowing who to contact after a visit
• Feeling rushed, overwhelmed, or intimidated
• Uncertainty about medical terminology

Encourage shared ideas or strategies if participants are comfortable.

4. Resources to Share (10 minutes)

Point participants to relevant PKD Foundation resources, such as:

• ADPKD Registry
• ADPKD Patient Handbook & KDIGO Plain Language Guide
• Centers of Excellence
• PKD Foundation Resource Library
• Clinical Trials
• Cooking Well

Briefly mention these resources and / or add the links to the meeting chat for virtual meetings.

5. Take Action: Putting Advocacy into Practice (10 minutes)

Invite participants to choose one or more actions:

• Write down outcomes that are most important to you
• Keep a running list of questions (notes app, notebook, or email draft)
• Decide how you prefer to communicate with your health care team
• Sign up for patient portals
• Save provider contact information in your phone or email

Optional closing question:

• What’s one small step you’ll take before your next appointment?

Optional Engagement Ideas

• Ask participants to review You Have Been Diagnosed with PKD: Now What? before the meeting
• Invite a Center of Excellence patient navigator to discuss communication tips
• Invite a social worker to discuss advocacy support and resources

Disclaimer

The information shared during this meeting is for general educational purposes only and does not replace medical advice, diagnosis, or treatment. Participants should consult qualified health care professionals familiar with their individual medical needs.

Thank you for using our Toolkit, please share your feedback.

Toolkit Overview

The Art of Living Well with PKD is a guided community discussion focused on the day-to-day realities of living with PKD and the many factors that affect quality of life. By sharing experiences and strategies with others who understand PKD, participants can gain insight, feel supported, and learn practical ways to better manage life with the disease.

This toolkit can be used:

• As a peer-led support meeting
• As a panel-style discussion with community speakers
• In virtual or in-person settings

The emphasis is on shared experience, learning from one another, and community support.

Learning Objectives

By the end of the meeting, participants will:

• Recognize common quality-of-life challenges faced by people living with PKD
• Feel supported through shared experiences and peer discussion
• Learn practical strategies others use to manage daily challenges
• Become aware of PKD Foundation resources that support living well

Who This Toolkit Is For

• People living with PKD at any stage
• Care partners and family members
• Community members seeking peer connection and support

Preparation (Before the Meeting)

Optional preparation:

• Invite 2–3 community members at different stages of PKD to share their experiences and strategies
• Review PKD Foundation resources related to quality of life
• Prepare brief PKD Foundation updates or announcements

Guest participants may include individuals willing to share how they manage:

• Pain
• Fatigue
• Mental health challenges
• Body changes such as PKD belly

Suggested Agenda (60 Minutes)

1. Welcome & Introductions (10 minutes)

• Welcome participants as they arrive or log in
• Introduce yourself and any community volunteers or guest speakers
• Optional: Invite participants to share their name and connection to PKD

2. PKD Foundation Updates (5 minutes)

• Share brief updates or announcements from the PKD Foundation
• Highlight support and education resources

3. Discussion Topic: The Art of Living Well with PKD (30 minutes)

Living Well with PKD

Share background (briefly, if helpful):

• Recent PKD Foundation community discussions highlighted pain, fatigue, PKD belly, and mental health as common challenges when living with PKD.

Invite guest participants to begin by sharing:

• The challenges they face managing PKD
• Strategies that help support their quality of life

Allow time for conversation and questions after each guest shares.

Open Group Discussion

• What is your biggest challenge managing PKD?
• Does anyone relate to what someone else shared?
• What tips or strategies help you manage your challenges?
• Many people with PKD experience pain—how does pain affect your life, and what helps you manage it?
• Fatigue is often overlooked—how do you manage daily fatigue?
• Living with a chronic condition can affect mental health. Would anyone like to share how anxiety or depression shows up for them?
• How has PKD belly or body changes affected you as you manage PKD?

Participants should always feel free to share—or simply listen.

4. Resources to Share (10 minutes)

Point participants to PKD Foundation resources that support living well, such as:

• Managing ADPKD-Treatments, Lifestyle, & Living Well Webinar
• Centers of Excellence
• ADPKD Registry
• PKD Foundation Mentoring Program
• HOPE Line
• Managing ADPKD: Treatments, Lifestyle, & Living Well Webinar
• PKD Chronicals Podcast

Briefly mention resources and / or post links in meeting chat for virtual meetings.

5. Take Action: Supporting Quality of Life (10 minutes)

Invite participants to choose one or more actions:

• Explore a PKD Foundation resource related to a challenge discussed
• Write down questions to ask their nephrologist about symptom management
• Connect with a mentor or peer for additional support
• Make note of strategies shared by others that they’d like to try

Optional closing question:

• What’s one thing you’ll take away from today’s conversation?

Optional Engagement Ideas

• As a group, create a list of questions to ask a nephrologist based on discussion themes
•  Keep a list of resources mentioned during the meeting and share them in a follow-up email
• Invite participants to continue the conversation through local or online community channels

Disclaimer

The information shared during this meeting is for general educational purposes only and does not replace medical advice, diagnosis, or treatment. Participants should consult qualified health care professionals familiar with their individual medical conditions and needs.

Get the word out in your local community!

Use Social Media

Save the Date!

Living with PKD comes with real, day-to-day challenges—and you don’t have to navigate them alone.

Join us for The Art of Living Well with PKD, a community conversation where people affected by PKD will come together to share experiences, challenges, and strategies for supporting quality of life.

Date: [Insert date]

Time: [Insert time + time zone]

Location: [In-person location or Virtual]

Whether you’re newly diagnosed or have been managing PKD for years, this is a space to listen, share, and connect with others who understand.

Registration details coming soon!

Post 4 weeks before your meeting date

Registration Reminder Post

Reminder: Registration is Open!

Don’t miss our upcoming community meeting, The Art of Living Well with PKD.

This peer-led conversation will focus on real-life topics like managing pain, fatigue, mental health, and other challenges that impact quality of life when living with PKD.

Date: [Insert date]

Time: [Insert time + time zone]

Location: [In-person location or Virtual]

Register here: [Insert registration link]

All are welcome—people living with PKD, care partners, and family members. We hope to see you there.

Post 1-2 weeks before your meeting date

Send a quick email

Send via your community email to community members that have registered for past meetings. Remember to BCC email addresses!

Subject: Join Us for Our Next PKD Community Meeting