Annual Report

Elevating Awareness and Advocacy

We raise awareness through marketing and public relations so people can understand PKD, our services and how to support our mission. We provide a free magazine (PKD Progress), a free monthly electronic newsletter, email updates, social media, several websites and much more. home page

We received more than 465,000 total visits to and in fiscal year 2013. We also made enhancements to our home page by adding quick, easy-to-find links for anyone who has just been diagnosed with PKD, have children with PKD, want to learn more about the disease or make a gift.

Our two blogs, PKD Will Not Beat Me and PKD Health Notes received more than 62,000 total visits.

Social Media

We saw a significant increase on social media, reaching more than 13,000 Facebook and 2,780 Twitter followers – an increase of more than 4,000 from the previous year. We were also named one of the top 50 social media influencers in orphan drugs and rare disease by the World Orphan Drug Congress.

31 Days of PKD Challenges

We celebrated March's National Kidney Month by participating in our second annual 31 Days of PKD Challenges, daily challenges that helped raise awareness of PKD. This initiative reached more than one million people and engaged more than 46,000 people on Facebook.

We were a proud partner of the first ever #GivingTuesday, a social media movement to create a national day of giving at the start of the annual holiday season. More than $2,000 was raised on this day using the Text to Donate program.



Our free e-newsletter, PKDnews, is sent to more than 50,000 people each month, up 35 percent from the prior year. Every issue of PKDnews includes the latest on PKD research news, education resources, PKD stories and much more.

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PKD Progress

PKD Progress is our free magazine for PKD patients, Foundation supporters, healthcare professionals and researchers. It covers the latest in PKD research, Foundation news and updates, patient stories and much more. We produced three publications during fiscal year 2013.

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PKD Progress - Summer 2012  PKD Progress - Fall 2012/Winter 2013  PKD Progress - Spring/Summer 2013


We received national media coverage through print and billboard advertisements. Print ads were placed in 280,000 magazines in October. These ran in Good Housekeeping, Redbook and Woman's Day in Atlanta, Kansas City, Mo., Las Vegas and Little Rock, Ark. Ten billboards were placed in North Carolina in December.

Hope Billboard   Hope Magazine Ad

Voices of PKD

In June, we created Voices of PKD, a collection of stories, testimonials, photos and videos that tell the story of living with the disease through the eyes of the PKD community.

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Voices of PKD

United on the HillUnited on the Hill

Awareness is also generated through playing a key role in legislative advocacy to support PKD-related initiatives. United on the Hill, a legislative and policy conference in Washington, D.C., allows advocates to meet with members of Congress to raise their understanding of PKD and discuss legislative priorities. Fifty-five advocates attended, representing 18 states, and conducted 65 meetings with members of Congress.

United on the Hill advocates served an important role and we are seeing results, including:

  • Advocates were able to encourage 13 members of Congress to co-sponsor immunosuppressive legislation.
  • Two members of Congress have joined the Rare Disease Caucus.
  • Numerous staffers have requested additional information about the number of kidney transplant recipients with Medicare coverage that have lost a kidney when coverage of immunosuppressive medications ends after 36 months.

Advocacy doesn't only happen at United on the Hill. Three Advocacy Alerts were sent to our advocacy group encouraging action on legislative priorities. Additionally, updates were made to the Advocacy Toolbox, containing sample emails/letters to customize, talking points, social media tools and links to find local legislators.

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