Social Media for PKDF Volunteers

Social Media Policy

The PKD Foundation utilizes social media to engage with the PKD community. Local PKD Communities may have local social media accounts approved by the Foundation and managed by volunteer PKD Connect Ambassadors and/or Walk Ambassadors. Volunteers are not permitted to set up social media accounts in connection with the PKD Foundation without prior permission from the PKD Foundation. If you are interested in starting a social media account, please contact your staff lead for additional information.

We appreciate our volunteers who run these accounts for spreading awareness about PKD and supporting our mission. By adhering to this updated policy, we can amplify our impact and maintain a unified voice across all platforms.

If you manage PKDF social media accounts, you must adhere to the following PKD Foundation policies:

• Be responsible and professional. Volunteers are responsible for the content they publish on behalf of the PKD Foundation and their local Community on any social media platform. Volunteers must ensure that all social media content aligns with the mission, values, and objectives of the PKD Foundation. If your actions on social media do not align with our mission, values, and objectives, we reserve the right to take corrective action.
• Respect confidentiality. Volunteers may not post content that discloses any confidential information about the PKD Foundation. Do not publish or report conversations that are private or internal to the Foundation.
• If you make a mistake, please immediately advise your staff lead of the matter. If you are able to, correct your mistakes immediately.
• Respect PKD Foundation branding. All local PKD Community social media accounts should be uniform, coordinated, and consistent with the Foundation’s brand guidelines. If you need a PKD Foundation logo, please reach out to your staff lead or email volunteers@pkcure.org.
• Add value. Social media communications from local PKD Communities should be beneficial to the community. Content should be relevant and appropriate.
• Be responsive. If someone asks a question or comments, volunteers should respond as soon as possible. If you’re not sure how to answer the question or respond to the comment, contact your staff lead or email volunteers@pkdcure.org.
• Keep in Mind: your posted content must align with and not contradict or conflict with any official partnerships, affiliations, or vetted associations of the organization. If you are not sure if the content aligns, please contact your staff lead before posting.

Growing Engagement — Social Media Tips

• Social media exposure can feel like it is building slowly at first, but make it a regular part of your communication and it will grow.
• Utilize formats approved in the PKD Foundation style guide.
• Post information, invitations, photos, links, etc., on the local PKD Community social media pages.
• Use the images on the page below to share PKD Foundation facts. Images on this page will be updated so you will be sharing the most up to date information.
• Include hashtags like #endPKD or #WalkforPKD in your content to help your post get noticed by the PKD community. Other hashtags to be utilized with your best judgement: #PolycysticKidneyDisease #ARPKD #ADPKD #PKDWarrior
• Recognize teams, sponsors and volunteers. Highlight milestones in their success and be sure to tag them in the post for more exposure.
• Be sure to promote upcoming events. Start with one or two posts the month before and build to more frequent posts as you get closer to the event (week of event and a thank you after the event).
• If your community is hosting an upcoming event (like the Walk for PKD), make sure to include any detailed information in your promotion and utilize copy and graphics from the national PKD Foundation account. Community members will come looking to your page for general event info like registration links, start times, and location.
• After you post the information, be sure to share it with your own, personal social media followers and ask the local PKD community, team captains, top fundraisers, volunteers, and others to do the same.
• Ask sponsors to like your social media pages and share Walk/event information on their pages.

A Bit More About Content — What should I share?

It is important to share accurate information when sharing research updates or PKD facts. Review these tips and if you have questions about content you would like to share, please contact your staff lead or email volunteers@pkdcure.org.

Share PKDF content. If you have not liked the national PKD Foundation Facebook page, please do so and share PKD Foundation content on your local PKD Foundation Community social media.

Occasionally, we do share information from sources outside of the Foundation. If our national page shares an outside source, you may also share any of these posts locally. If you run across relevant information that you would like to share, please confirm with your staff lead before posting.

Ask members of your community if you may share their posts. Whether they are promoting a personal fundraiser or telling the story of their journey with PKD, these add a human element to your page and encourage others to get involved.

Check out our further resources below. If you have questions, please email volunteers@pkdcure.org.