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ADPKD Registry: putting power in the patient’s hands

ADPKD Registry: putting power in the patient’s hands

by PKD Foundation Staff | Jun 4, 2019 | ADPKD Registry, Advocacy, Awareness, Education, Q and A

In May we announced the upcoming ADPKD Patient Registry, a collection of individuals with Autosomal Dominant Polycystic Kidney Disease (ADPKD). This month, we sat down with Elise Hoover, Director of Research at the PKD Foundation (PKDF), to learn more about why PKDF...
PKD in Children conference: parents building a support network

PKD in Children conference: parents building a support network

by PKD Foundation Staff | May 29, 2019 | ADPKD, ARPKD, Education

On May 3–5, parents of children with ARPKD and ADPKD gathered in Chicago, Illinois, for the PKD in Children conference. The event is a destination for parents to receive essential information on managing a child’s health when they live with PKD. What did attendees...
Finding collaboration opportunities with the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK)

Finding collaboration opportunities with the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK)

by PKD Foundation Staff | May 22, 2019 | Advocacy

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

ADPKD Registry: learning in real time

by PKD Foundation Staff | May 14, 2019 | ADPKD Registry, Advocacy, Awareness, Education

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 the disease individually...
Building awareness through partnership: PKD Foundation and Discovery Communications / Discovery en Español

Building awareness through partnership: PKD Foundation and Discovery Communications / Discovery en Español

by PKD Foundation Staff | May 2, 2019 | Awareness, Education

If you follow us on social media (Facebook, Twitter, Instagram and LinkedIn), we hope you’ve already heard about our exciting new partnership with Discovery Communications / Discovery en Español. Knowing how important it is to share information about polycystic kidney...
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