Other foundations and informative sites:
American Association of Kidney Patients (AAKP)
Education and advocacy for kidney patients in the United States
National Kidney Foundation
A resource for all people affected by kidney disease
PKD Connect
A community of care and resource center
What to Expect from the ARPKD EL-PFDD Meeting On August 29, 2023 the PKD Foundation will hold its first ever Externally Led Patient-focused Drug Development (EL-PFDD) Meeting on Autosomal Recessive PKD (ARPKD) and Congenital Hepatic Fibrosis (CHF). Should you attend the meeting? What should you...
The PKDF Research team is excited to expand the features available in the ADPKD Registry in summer 2023. This project has been carefully planned and executed with our patients at the center. The last few years have been spent building the largest ADPKD patient-reported outcomes dataset.
Registry Annual Impact Report Webinar The ADPKD Registry is the first nationwide, patient-reported database for ADPKD, and so far over 2,700 people have signed up! This report highlights WHERE and HOW the ADPKD Registry data has been used since its inception in 2019, gives a sneak peek at the...
