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.
Hear from our advocates
Patti Ruffin exemplifies the importance of advocates meeting with members of Congress to fight for PKD legislature--hear more about her experience on the Hill.
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.
Support 21st Century Cures Act (H.R. 6)
Take action: On Friday, Nov. 25, leaders of the House of Representatives Energy and Commerce Committee and Senate Health, Education, Labor and Pensions Committee (HELP) announced a bicameral agreement on a revised 21st Century Cures Act (now known as H.R. 34). The House of Representatives voted on H.R.34 on Nov. 30 and passed their bill by a vote of 392 to 26. The Senate could vote on the revised 21st Century Cures legislation as early as Monday, Dec. 5. Contact your Senators and ask them to pass #CuresNow.
Support Living Donor Protection Act (S. 2584/H.R. 4616)
Take action: Please contact your representative and senators and urge them to cosponsor S. 2584/H.R. 4616 and support legislation to protect the rights of living donors and remove barriers to organ donation.
Support Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139)
Take action: H.R. 6139 will ensure that patients have access to the medications they need to keep transplanted kidneys healthy. Please contact your representative and urge them to co-sponsor H.R. 6139.
Support additional funding for kidney research
Take action: In June 2016, the Senate Appropriations Committee approved $34.1 billion for National Institutes of Health (NIH) which is a $2 billion increase above the current spending level and provides a $75 million increase for National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Ask your senators to pass the $2 billion increase in NIH funding.
Support the Kidney Caucus
Take action: Please contact your representative and ask them to join the Kidney Caucus.
Support the Rare Disease Caucus
Take action: Please contact your representative and ask them to join the Rare Disease Caucus.