Advocacy
Awareness
Education
Research
Finding collaboration opportunities with the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK)
On April 23, several of us from the PKD Foundation (PKDF) met with our colleagues from the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK) in Bethesda, Maryland. NIDDK, part of the National Institutes of Health (NIH), conducts and supports...
ADPKD Registry: learning in real time
Published May 14, 2019 PKD patients are very well-informed about their disease and its consequences. As a disease impacting multiple generations or appearing unexpectedly as a spontaneous mutation, patients and their families witness first-hand the progression of...
Raise your voice for PKD during Congress’s April recess
As Kidney Month starts winding down, keep up the momentum by raising your voice for PKD! Both the House and Senate will leave Washington, D.C. from April 15-26, 2019, and many will be back in their hometowns. Except for the Passover/Easter weekend (April 19-22),...
PKDF Director of Government Affairs recaps an eventful Rare Disease Week
This past week, 450 rare disease advocates and patients descended on Washington, D.C., for Rare Disease Week, and I was glad to be amongst them. It was a packed agenda with four days of activities and awareness opportunities and I’d like to share the highlights:...
Voices of PKD: Jim Myers, kidney advocate
My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond, Ind. My mother and father ran a couple of grocery stores in my hometown, Cedar Lake, Ind. My dad was afflicted with polycystic kidney disease. On his...
Important memo for PKD community regarding the Affordable Care Act
Our Director of Government Affairs, Alexis Denny, recently provided the following memo on a federal district court judge's decision in the case of Texas vs US regarding the Affordable Care Act (ACA): On December 14, 2018, a federal district court judge struck down...
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On April 23, several of us from the PKD Foundation (PKDF) met with our colleagues from the National Institute ofRead More
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Published May 14, 2019 PKD patients are very well-informed about their disease and its consequences. As a disease impacting multipleRead More -
As Kidney Month starts winding down, keep up the momentum by raising your voice for PKD! Both the House andRead More
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This past week, 450 rare disease advocates and patients descended on Washington, D.C., for Rare Disease Week, and I wasRead More -
My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond,Read More
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Our Director of Government Affairs, Alexis Denny, recently provided the following memo on a federal district court judge’s decision inRead More
