PKD Connection Blog

Go to: PKD Blog
Go to Category: ARPKD, ADPKD, Education

PKD in Children conference: parents building a support network

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 learn?

During the weekend, attendees provided support for each other and connected with others who are experiencing some of the same issues and concerns. Parents also heard from expert pediatric nephrologists and other health professionals about how to navigate disease management for children with PKD and learned about the latest research and clinical trials.PKD in Children conference 2019

This year included many first-time attendees who were able to make connections with families who have attended the conference in the past. These newcomers received comfort from other parents who shared their experiences. The Q&A session continues to be one of the favorites at the conference because there are so many questions that don’t get addressed in the individual sessions.

“Many times, parents of children with PKD feel alone in their journey because they may not have met anyone in their local community who has a child diagnosed with PKD,” says Nicole Harr, Director of Community Engagement, PKD Foundation. “The connections made with other parents and with our PKD Parents Chapter Coordinators ensure that when they leave, they have a support system of other parents dealing with similar issues.”

New in 2019

This year’s event also introduced a session on clinical trials, end points, and available studies. This was a popular addition to the conference schedule because there have been a limited number of studies available for children. Such news was a positive message for all in attendance, knowing there are opportunities for children to participate in clinical studies and advance research toward treatments for children in the future, according to Harr. Attendees also heard from the PKD Parents Chapter Coordinators and learned other ways to be active throughout the year.

Staying involved

We encourage everyone to join the PKD Parents Chapter or a local PKD chapter. Our PKD Parents Chapter Facebook page is very active and is a great place for parents to connect. Another opportunity is to sign up for a fundraising event like Walk for PKD, which occur throughout the spring and fall at locations across the U.S. We also recommend checking out programs and services offered through PKD Connect. For more information, feel free to email us at education@pkdcure.org or call 800.753.2873.

Leave a Reply

Your email address will not be published. Required fields are marked *