Advocating on PKD Awareness Day

Published on August 31, 2021 | Every year, there’s one day dedicated to educating friends, families, and communities about PKD—PKD Awareness Day. And September 4th is just around the corner. As we spread education and awareness, we create more opportunities to advocate for the needs of the PKD community. Let’s look at some ways you can be an advocate as you celebrate PKD Awareness Day.

 

Advocacy Alerts

Beyond research for therapeutic treatments and a cure, it’s important to make legislative changes to help the PKD community. The PKD Foundation dedicates resources to ensuring Congress and federal agencies are aware of the needs of the PKD community. By furthering legislation, regulation, and federal funding opportunities, we can improve the lives of everyone in the PKD community.

You can help make that change possible. Join us in educating your elected officials about how they can help fight PKD! Sign up for our PKD Advocacy Alerts to get notified of opportunities to raise your voice for PKD patients.

Advocacy Champions Network

Another great way to celebrate PKD Awareness Day is by joining our Advocacy Champions Network (ACN). The ACN is a group of PKD community members from across the U.S. advocating with federal policymakers. Members of the ACN are hand-picked to share their personal stories and advance the legislative priorities of the PKD community.

Last year, the ACN included 36 dedicated Champions from 22 states. Recruitment for our 2021 class of Advocacy Champions will open soon! Sign up to be notified once our applications go live.

 

Talking Advocacy on PKD Awareness Day

Let your friends and families know what’s going on in PKD advocacy. Before the new year, we helped pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019. This year, we supported secure protections for living donors. We announced our commitment to addressing racial disparities in PKD care. Whether it’s sharing your PKD story, posting PKD facts, or emailing your elected officials about the Living Donor Protections Act, each of us can make a difference on PKD Awareness Day.

 


The PKD Foundation is the largest private funder of PKD research in the U.S. Since 1982, we have proudly funded more than 1,300 research projects and leveraged $1.5B in research funds. Each year, the Foundation identifies and supports the work of scientists and researchers from around the world who look for ways to treat and eventually cure PKD. Our vision is to #endPKD. However, donations are necessary to fund research that leads to more effective treatments and ultimately a cure for PKD.

2 Comments

  1. Linda Wegweiser

    I have stage 5PKD. I can’t believe that there’s nothing new that has come out to help patients like me. This has been in my family for at least 100 years or more and still hasn’t been any kind of medication that helps. Hopefully one day there will be because my grandson has it also and he’s only eight months old

    Reply
    • Joy Branch-Smith

      Hi Linda, thank you for sharing how your family has been impacted by PKD. The first treatment for ADPKD was approved in 2018. Read more about tolvaptan here, h.ttps://pkdcure.org/tolvaptan/. Read more about treatments for PKD currently being developed in the U.S. here, https://pkdcure.org/what-is-pkd/latest-research/pipeline/.

      Reply

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