Providing Education and Support
On a local and national level, we provide in-depth resources and education about living with PKD to empower people to manage their health through webinars, videos, online communities, print materials and local Chapters.
We provide local services through our 62 volunteer-led local Chapters across the country. They serve as the backbone of the PKD community and bring to life the mission of the organization by ensuring that no one faces this disease alone. There were nearly 150 Chapter education and support events held in fiscal year 2013. The education meetings provide valuable information from healthcare professionals, while support activities range from lending a listening ear to organized group outings.
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In fiscal year 2013, 1,321 information packets were mailed containing materials for those just diagnosed or looking to learn more about PKD.
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Webinars & Videos
We host free education webinars that give patients and family members the information they need and want the most, presented in an easy-to-follow manner by experts in the field. We held three education webinars in fiscal year 2013:
In total, 330 participants listened to the live webinars, and the recorded webinars received nearly 4,000 views. On average, a participant's knowledge on the webinar subject increased by 51 percent after attending.
We also utilize YouTube to organize and share informative videos. In fiscal year 2013, we added 24 videos to our YouTube channel, which have received more than 11,400 views. If you would like to sign up to receive education information, click here.
In March, 26 local PKD Chapters participated on our educational live broadcast, What's New in PKD: A Day of PKD Learning. Researchers and clinicians from the Kidney Institute at the University of Kansas Medical Center shared the latest information in PKD research, clinical trials, our Accelerating Treatments to Patients initiative and more.
In April, we sponsored the first national conference for parents and caregivers of children living with PKD and other cystic diseases. Nearly 20 families attended the two-day conference, PKD/CHF & Other Cystic Diseases: From Diagnosis to Daily Living, covering various topics including: daily living with cystic kidney disease, nutrition, dialysis, transplantation and treatment options.
PKD Parents Chapter
The virtual ARPKD Chapter was renamed the PKD Parents Chapter to be more inclusive for parents of children with ARPKD as well as ADPKD. This Chapter, led by volunteers Julia Roberts and Michele Karl, has served more than 500 families since 2000. Once a family with a child living with PKD reaches out to the Foundation, a volunteer from the PKD Parents Chapter contacts them for support, compassion and guidance. Families can be connected with experts and other local families and are supported in many ways through the Chapter.