Published on February 21, 2023 | Last spring, we hosted our first Virtual Advocacy Day. This event was open to every member of the PKD community—patient, caregiver, researcher, etc. Together, they met with federal lawmakers around the country to advocate for the PKD community’s needs. The PKDF is excited to announce that registration is now open for Virtual Advocacy Day 2023, taking place on Wednesday, April 19!
What to Expect on Virtual Advocacy Day 2023
As the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD), the PKD Foundation works with Congress to ensure that the needs of the PKD community are heard in Washington, D.C. This includes creating opportunities for community members to directly engage with their lawmakers. With Virtual Advocacy Day, everyone can participate. No prior advocacy experience is necessary and it’s completely free to participate.
So, what exactly would you be doing? Alongside community members from across the country, you’ll meet with the federal lawmakers and/or their staff. Together, you’ll encourage them to:
- Maintain and increase federal investments in PKD research. This includes through the Department of Defense’s Peer Review Medical Research Program (CDMRP) under the Congressionally Directed Medical Research Program (PRMRP).
- Support passage of federal living donor protections that would remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability, or long-term care insurance to living donors
- Elevate and address the consequences of racial disparities in kidney disease diagnosis, treatment, and access to transplantation, particularly for PKD. This includes passing forthcoming legislation that would improve data collection and transparency in kidney transplantation.
After registering, the Foundation will coordinate with your congressional offices to schedule meetings between 9 a.m. and 5 p.m. (ET) on the day of the event. To make participation easier, all meetings will take place virtually. Even from the comfort of home you can make an impact on the future of PKD.
Preparing for Virtual Advocacy Day
When you participate, you’ll have the opportunity to meet with your own federal lawmakers and staff. Additionally, you’ll meet offices representing states and congressional districts of your fellow PKD community members. While we won’t be able to provide participants with their exact schedule until closer to the event, registrants should plan to be available for meetings between 9am and 5pm ET on Wednesday, April 19.
Before the actual event, the Foundation will host a training webinar on Thursday, April 6. This will provide an overview of the policies and proposals that participants will discuss during their meetings and provide the necessary materials to effectively advocate for the PKD community. Additionally, this is a great time to have all of your advocacy questions answered.
Firstly, if you’re interested in participating, please register before Wednesday, April 5. This ensure we can reach out to your congressional offices to schedule meetings in a timely manner. Secondly, if you have any questions regarding Virtual Advocacy Day or the Foundation’s advocacy priority questions, please contact Patrick Meade. And finally, consider signing up to receive PKD Foundation advocacy updates year-round.
The PKD Foundation Virtual Advocacy Day 2023 is made possible by a grant from Otsuka America Pharmaceutical, Inc.