Advocacy

Join us in educating your elected officials about how they can help fight PKD. Your voice is a vital piece of the puzzle for helping increase PKD research dollars to bring treatments and therapies to patients, and provide the best care for those who are reliant on dialysis or a kidney transplant to stay alive.

What is advocacy?

Advocacy is the foundation of democracy. It is an attempt to influence public policy, by a person or a group, in a way that brings about legislative action or change. Members of Congress look to their constituents to bring important information to their attention. As someone with PKD, or family, or a friend or colleague, you know more about PKD than anyone else.

Why is it important?

We encourage people with PKD and those that care about them to meet with their local congressional representatives because just one personal story and one relationship can make a significant difference. Additionally, members of Congress want and need to hear from you.

Our current legislative priorities

Now more than ever, it is critical for patients to advocate on behalf of themselves, families, friends and colleagues with PKD. Share your voice and tell your elected officials how they can help fight PKD.

Health Care Reform

The new Administration and the 115th Congress have stated that they will repeal and replace the Patient Protection and Affordable Care Act (ACA). The ACA eliminated pre-existing condition exclusions and waiting periods and established new health insurance options. While the ACA provides protections for people with pre-existing conditions, health care reform is still needed to ensure that everyone has affordable access to coverage. 

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Support Living Donor Protection Act of 2017 (H.R. 1270)

The Living Donor Protection Act is bipartisan legislation that protects the rights of living donors and removes barriers to organ donation. This bill was introduced in the House of Representatives by Congressman Jerrold Nadler (D-NY) and Congresswoman Jaime Herrera Beutler (R-WA).

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Support the OPEN ACT (H.R. 1223 / S. 1509)
Orphan Product Extensions Now, Accelerating Cures & Treatments

The OPEN ACT passed the House in July of 2015 but was not signed into law. The bill was reintroduced in the House of Representatives on February 27, 2017 by Representatives Gus Bilirakis [R-FL 12], G.K. Butterfield [D-NC 1] and Mike McCaul [R-TX 10].  Senators Orrin Hatch [R-UT] and Robert Menendez [D-NJ] introduced S. 1509 in June. The OPEN ACT would provide an economic incentive to explore ways to bring more treatments for rare diseases, like ARPKD, to market through the process of repurposing drugs.

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Support Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (formerly H.R. 6139)

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act will ensure that patients have access to the medications they need to keep transplanted kidneys healthy. Once this bill is introduced in the new 115th Congress, PKD advocates can ask Representatives and Senators to sign on as co-sponsors of this legislation.

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Support additional funding for kidney research

On September 7, the Senate Appropriations Committee approved its Labor/HHS/Education Appropriations bill. The Committee increased funding for NIH to $36.1 billion for FY18—a $2.0 billion increase over FY17 funding levels. 

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Support the Kidney Caucus

Take action: Please contact your representative and ask them to join the Kidney Caucus.

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Support the Rare Disease Caucus

Take action: Please contact your representative and ask them to join the Rare Disease Caucus.

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