Our Impact

We created the ADPKD Registry, the first national patient registry for individuals with ADPKD. Growing tremendously since 2019, it now includes nearly 3,000 registrants. The Registry collects information in a standardized and anonymous format, telling us about the patient journey, unmet medical needs, and patient preferences while revealing more about what life is really like for ADPKD patients and their families.

To create better patient outcomes, we need more than just new PKD treatments. We need legislative change and protections for the PKD community. In 1990, we lobbied Congress to include the first Appropriations Committee report language about PKD research support by the National Institutes of Health (NIH), encouraging the NIH to expand research in the pathogenesis and treatment of PKD.

In 2008, the first PKD Foundation United on the Hill event was hosted. It pushed for more federal funding for PKD research and passing the Genetic Information Nondiscrimination Act (GINA). After a 13-year fight, GINA was passed by Congress and signed into law.

To further PKD-inclusive legislation, we created the PKD Foundation Advocacy Champions Network (ACN). The ACN is an exclusive community of patients, family members, and clinicians dedicated to improving the lives of people living with PKD. At its core, the ACN teaches its members how to advocate for legislative change with their state representatives.

And in 2021, we helped 18 states pass protections for living organ donors. Next, we’re tackling passing these protections at the federal level.

At the first Walk for PKD in 2000, 900 PKD patients, families, and friends raised $214,000. By 2024, the Walk for PKD had raised over $35Mfor research with over 5,000 participants in cities across the nation.

Beyond the Walk, the Foundation hosts and supports various PKD events nationwide. We organize virtual support meetings, promote local fundraising activities, and ensure that everyone in our community can connect and find resources. Through PKD Connect, you can access a wealth of information, resources, and connections to help you along the way.