An issue dedicated to Fabry disease, with tips on social media, new kidney disease legislation and more!

In this Issue:

  • The Dialysis PATIENTS Demonstration Act
  • Fabry Disease: When A Genetic Freight Train Crashes into Your Life
  • An Introduction to Fabry Disease
  • Walking in Their Shoes: A Conversation About Living with Fabry Disease
  • Clinical Research 101: Participating in a Trial
  • The Truth about Transplants: How to Cope A­fter Surgery
  • My Gift of Life Journey
  • Using Social Media for Advocacy
  • When You Have Lost That Loving Feeling: Sex and Intimacy on Dialysis
  • The Creations of a Chef with CKD
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President’s Message

Dear friends,

In the age of the 24-hour news cycle, at the Dialysis Patient Citizens (DPC) Education Center we continue to look for the best ways to share the latest kidney disease news and information with you. Currently, we communicate on social media (namely Facebook), produce this newsletter in an easy-to-read online format, and share our education seminars online for viewing at your convenience. You probably noticed, we are integrating content relevant to you across all forms of media. Articles in the print issue of the Kidney Citizen may correspond to educational seminars you can view online or attend live by phone. These seminars may have been inspired by social media posts or may have clickable content when viewing the online version of the Kidney Citizen. Our goal is to leverage all forms of information sharing to best serve your needs.

In this issue, you will learn more about Fabry disease, a rare genetic disorder that can lead to kidney failure and will see how their support group, FSIG, grew by utilizing online communications. You will also read more about sexual health and dialysis, which corresponds with a previous education seminar that can be viewed online. We also included more information about how Dialysis Patient Citizens and the DPC Education Center are utilizing social media to improve advocacy efforts and the sharing of information on kidney disease research, treatments and clinical trials.

We hope you find this information beneficial as you navigate life as a kidney disease patient. Please consider liking and following us on Facebook to receive supplemental information in addition to this publication.

Sincerely,
Nancy L. Scott
DPC Education Center
Board President