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 […]
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 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 and from generation-to-generation. They […]
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 […]
For this week of National Kidney Month, our challenge to you was to tell someone new! Spreading the word is an empowering thing you can do for the community, no matter how PKD affects you. To show this, we asked […]
We’re only a couple months out from the 2019 PKD in Children Conference, and if you’re a PKD parent, this is a can’t-miss event! Join us in Chicago from May 3 to 5 for an amazing opportunity to learn essential […]
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 […]
#GivingTuesday is right around the corner, and this year, we’re asking: what can you give? Can you give a donation? Our goal for #GivingTuedsay is to raise $18,000 — the amount needed to fund ten weeks of PKD research. When […]
Our recent transplantation webinar with Melissa Blevins Bein, Executive Director of Transplant Programs at UC Davis Medical Center, was a hit! Registration filled up fast, but not before Memphis Chapter Coordinator, Karyn Waxman, reserved her spot. We reached out to Karyn to […]
Let’s raise the bar on PKD Awareness Day and come together as a united front to spread the word about this disease further than we ever have before. Join us on Tuesday, Sept. 4, as we spread the word. Here’s a […]