by PKD Foundation Staff | Mar 4, 2019 | Advocacy, Awareness, Education
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:...
by PKD Foundation Staff | Nov 16, 2018 | Awareness, Education, Research
#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 you select the PKD Foundation as your...
by PKD Foundation Staff | Oct 30, 2018 | Education, Transplantation
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...
by PKD Foundation Staff | Aug 17, 2018 | ARPKD, Education
We’re excited to feature our new ARPKD Patient Handbook as a resource for both parents of children with ARPKD and older ARPKD patients who are interested in learning specific information about their disease. We recently reached out to Michele Karl, ARPKD parent and...
by PKD Foundation Staff | Aug 3, 2018 | Education, PKD Connect
If you, a family member or friend are impacted by PKD, sometimes you need advice, encouragement or a shoulder to lean on from someone who knows firsthand what you’re going through. Enter our PKD Connect Peer Mentor Program. This new program, part of our PKD Connect...
by PKD Foundation Staff | Jul 20, 2018 | Education
My name is Zseraldina Ferenczi and I am the Community Outreach Coordinator at the PKD Foundation. I am excited to tell you about an important new resource for anyone impacted by polycystic kidney disease (PKD). It’s a web portal called PKD Connect where you can find...
