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...
by PKD Foundation Staff | Mar 22, 2019 | Awareness, Education
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 our Marketing Specialist, Tierra Hogan, a non-patient,...
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 | 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...
