How We're Ending PKD
The PKD Foundation is the only organization in the United States solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) to improve the lives of those it affects. We do this through promoting programs of research, education, advocacy, support and awareness on a national level, along with direct services in local communities across the country. Our vision is that one day no one will suffer the full effects of PKD.
Our primary goal: to discover treatments and a cure for polycystic kidney disease.
Our focus is Accelerating Treatments to Patients (ATP), an initiative dedicated to finding treatments as soon as possible. We invested $1.5 million in the ATP initiative in fiscal year 2013, making us the second largest funder of PKD research after the National Institutes of Health (NIH).
This investment included four drug candidates completing testing, the PKD Outcomes Consortium Project (PKDOC) briefing book was updated with further data analysis, and tolvaptan (developed by Otsuka Pharmaceutical Development & Commercialization, Inc.) was accepted for priority review by the U.S. Food and Drug Administration (FDA).
Our 62 volunteer-led Chapters are the backbone of the PKD community and they ensure that no one faces this disease alone. Nearly 150 Chapter education and support events were held in fiscal year 2013.
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.
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 the three webinars presented in fiscal year 2013, participants' knowledge on the webinar subject increased by 51 percent after attending.
With 465,000 total web visits and social media followers growing by 4,000, we are raising awareness through marketing and public relations so people can better understand PKD, our services and how to support our mission.
Fifty-five passionate PKD advocates attended United on the Hill, a legislative and policy conference in Washington, D.C. The advocates represented 18 states and conducted 65 meetings with Congress.