Published March 8, 2024 | It’s that time of year again. The PKD Foundation is excited to announce that registration is now open for Virtual Advocacy Day. On Tuesday, April 9, the entire PKD community can join this free event to engage with federal lawmakers and their staff in support of policies that will transform care for people living with polycystic kidney disease (PKD).
Virtual Advocacy Day 2024
Now in its third year, the PKD Foundation’s Virtual Advocacy Day is designed to educate and prepare PKD patients, caregivers, researchers, and supporters with varying levels of advocacy experience to meet directly with policymakers and staff to share their PKD stories and discuss the Foundation’s policy priorities.
Last year, nearly 100 PKD community members, representing 30 states and one U.S. Territory, participated in 110 congressional meetings. This is a powerful opportunity to inform change for everyone impacted by PKD. This year, Virtual Advocacy Day participants will be advocating for:
- PKD research funding: One of the largest funding sources for PKD research comes from the Department of Defense’s Peer Review Medical Research Program, under the Congressionally Directed Medical Research Program. Each year, it’s one of the Foundation’s top policy asks.
- The Living Donor Protection Act: This legislation would remove barriers to organ donation by prohibiting insurance companies from denying or limiting life, disability, or long-term care insurance to living donors. Additionally, it ensures that organ donors qualify for unpaid time off to recover from organ donation under the Family Medical Leave Act.
- The Living Organ Donor Tax Credit Act: This bill would provide a one-time, refundable tax credit of $5,000 to offset the various expenses associated with organ donation.
“Advocating for investment in PKD research isn’t just about combating the specific disease. It’s a testament to our commitment to advancing medical science, enhancing quality of life, and fostering a healthier future for all. Every dollar directed to PKD research represents a stride toward understanding, treating, and ultimately curing this complex condition, offering hope and relief to millions worldwide.”
—Matt Becka, Chief Research Officer, PKD Foundation
What will the day look like?
After you register, the Foundation will coordinate congressional meetings on your behalf. Your meetings schedule will be finalized about one week before Virtual Advocacy Day. To avoid any scheduling conflicts, block your calendar from 9:00 a.m. to 5:00 p.m. (ET) on April 9. All meetings will be virtual.
In order to advocate, all you need is an internet connection and a quiet space to talk. That means you can advocate from anywhere!
How can I prepare?
No previous advocacy experience? No problem!
To prepare you for the event, the Foundation will host a webinar on Thursday, March 28 at 8 p.m. (ET)/5 p.m. (PT). This will include an overview of the legislative priorities, tips and tricks on how to have a successful meeting with federal lawmakers and staff, and other important event details. Attendance at this webinar is mandatory for participation in the Virtual Advocacy Day 2024. On April 8, we’ll also host optional “office hours” to answer last-minute questions.
If you want to participate, please register by Friday, March 22. This ensures there’s enough time to contact congressional offices to schedule meetings.
The PKD Foundation Virtual Advocacy Day 2024 is made possible by a grant from Otsuka Pharmaceutical, Inc.
How do I log in to Advocacy Day webinar