Community Meeting Toolkits

Meeting Planner 

Are you newly diagnosed, new to the PKD Foundation or looking for ways to connect with others that understand what you are going through? This meeting is for YOU!

Join us to learn about PKD Foundation resources available to help you learn more about PKD, find the support you are looking for and meet others in your very own community.

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: I Have PKD, Now what? 

• No one feels alone 

• Encourage meeting attendees to introduce themselves and share a little about their PKD journey 

Share resources 

• Find a clinic 
• Clinical Trials  
• ADPKD Registry 
• PKD Life  

Take Action  

• Make sure all meeting attendees have a patient handbook. 
• Share Finding the right PKD doctor checklist 

Engagement ideas 

• Watch PKD Basics webinar during the meeting or send the link out to registered attendees ahead of the meeting 
• Before the meeting, suggest that registered attendees try a recipe from Cooking Well Cookbook and share cooking tips during the meeting. 
• Ask a community member that has participated in a clinical study or trial to attend and share experiences. 
• 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. 

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 < https://connect.pkdcure.org/adpkd-registry/> 
• PKD Life < https://pkdcure.org/pkdlife/> 

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. 

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 handbooks (ADPKD & ARPKD)
• 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.  

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 pkdcure.org 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.

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. 

Meeting Planner 

Learning to advocate for yourself improves your outcomes. By learning to advocate for yourself, you create a more positive outlook because you allow yourself to have more control instead of feeling helpless. Self-advocacy also increases your sense of confidence when working with your doctor.  

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: Be YOUR Own Best Advocate 

• Define self-advocacy – Ask everyone to share what self-advocacy means to them. 

• The Merriam-Webster dictionary defines ‘advocate’ as a verb that means “to support or argue for”. ‘Self-advocacy is defined as “the action of representing oneself or one’s views or interests”.  

• Share experiences – Ask everyone to share experiences when they advocated for themselves or for a loved one or when they wished they had advocated for themself or a loved one. 

• Discuss things that make self-advocacy difficult for you. (examples: I forget to ask my questions , I’m not sure who to contact with my questions after appointments, etc.)  

Share resources

• ADPKD Registry 
• Best practices for disease management – working with your health care team 
• Communicating with your health care team 

• Centers of Excellence 

Take Action

• Make a list of outcomes that are important to you – either yourself or the person you advocate for 
• Determine a place where you can keep questions that come to mind that you want to remember to ask your doctor at the next visit 
• Determine how you should communicate with your health team. 
• Sign up for patient portals 
• Save contact information in your phone or email, etc. 

Engagement ideas

• Ask attendees to preview Best practices for disease management – Communicating with your health care team ahead of the meeting.  
• If you have a COE in your community, ask the patient navigator to join the call to discuss ways to communicate with health care teams at the center.  
• Invite a social worker to join the call. 

Meeting Planner 

Living with and managing PKD is multifaceted and impacts quality of life. By sharing challenges with others that understand what you are going through, you gain insight and learn strategies to elevate your quality of life.   

Preparation

Invite 2-3 community members that are managing PKD at different stages of progression to attend the meeting to share their best tips for managing 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: Be YOUR Own Best Advocate 

In 2023 – 2024, the PKD Foundation engaged the PKD community via social media in discussions about managing the day-to-day challenges when living with PKD. The PKD community shared that Pain, Fatigue, PKD Belly and Mental Health are the biggest challenges PKD patients face. Let’s find out if our local community is dealing with these challenges and how we can support each other through these challenges.   

• Invite your guests to begin the conversation by sharing their challenges managing PKD.  
• Allow time for conversation and questions after each guest shares. 
• Open the meeting up for continued discussion: 
  • Conversation starters 
    • What is your biggest challenge managing PKD? 
    • Does anyone else feel challenged by what “name” shared? 
    • Do you have tips that help you manage your challenges? 
    • 60% of PKD patients report experiencing pain – can anyone share how pain impacts your life and any tips you use to manage pain? 
    • Fatigue is often overlooked, would anyone like to share how you manage daily fatigue? 
    • According to the National Institute of Mental Health, people with chronic medical conditions are at higher risk of depression. Does anyone experience anxiety or depression that would like to share? 
    • Would anyone like to share how PKD belly has impacted you as you manage PKD? 

Share resources

• ADPKD Registry 
• Best practices for disease management – working with your health care team 
• Communicating with your health care team 
• Centers of Excellence 
• Pain management session – PKDCON
• Centers of Excellence
• Empowering Your PKD Life recording
• Peer Mentoring
• HOPE Line

Take Action

• Staying healthy is important when managing chronic disease! Share a few things to do as you manage PKD:
  • Monitor your blood pressure and talk with your nephroogist about your target blood pressure
  • Keep appointments with your health care team and get labs as recommended by your doctor
  • Stay physically active -talk to your health care team about any changes to exercise
  • Maintain a well-balanced diet – talk to your health care team about your diet and any changes that you make to your diet

Engagement ideas

• Ask attendees to preview Empowering Your PKD Life ahead of the meeting.  
• Work together as a group to come up with a list of questions that patients should ask their nephrologist to help manage the challenges that came up during the discussion. 
• During the call, make a list of resources to share in a follow up email with attendees. (Nicole and Lavonne can help!)