An issue dedicated to Fabry disease, with tips on social media, new kidney disease legislation and more!
In this Issue:
- Fraternal Order of the Eagles Honors Eckman Short’s Memory
- The Dialysis P.A.T.I.E.N.T. Act: Additional Support for Patients with End Stage Renal Disease
- 2016 Advocacy Day Recap
- What Fluid Removal and Blood Sugar Have in Common with Peritoneal Dialysis (PD)
- Ask a Nephrologist (and Psychologist!)
- The Gout and Kidney Connection
- Tornadoes, Hurricanes and Blizzards, Are you ready?
- The Rise of Donors with Increased Risks of Infection Transmission: What it Means for you as a Patient Awaiting Transplantation
- Phosphorus and Dialysis
- Low Phosphorus Recipe
- What’s Up with This Support Group Mumbo-Jumbo?
I want to take this opportunity to thank you for your continued support. While Dialysis Patient Citizens (DPC) Education Center is a relatively new organization, we are fortunate for all of the assistance we continue to receive from you to help us further empower kidney disease patients. We greatly appreciate all of the feedback and input that you continue to provide for the Kidney Citizen, as well as to our many other educational resources. I am also humbled by your generous contributions to advance our educational efforts. In this issue, we highlight one such contribution by the Fraternal Order of the Eagles in memory of Eckman Short, a dedicated caregiver for his daughter who was diagnosed with a rare form of kidney disease.
As you know, our mission is to improve kidney patients’ quality of life and reduce the occurrence of ESRD through education. Education is not limited to only the clinical aspects of your care, it’s important to be aware of policy changes that can affect your care quality as well. ‑at is why I want to make sure that you are aware of new legislation in Congress called the Dialysis PATIENT Demonstration Act (H.R. 5506/S. 3090). ‑is bipartisan bill was recently introduced in both the House of Representatives and the Senate. It would allow dialysis providers and others to coordinate care for patients while increasing patient engagement in their care. ‑e goal is to test additional models of care to improve patient outcomes. Detailed information, including examples of current care coordination efforts, was provided in our last issue of the Kidney Citizen. In this issue, you can read more about the Dialysis PATIENT Act itself.
Most importantly, I wanted to draw your attention to three pre-printed, customized postcards to your Senators and Representative in support of the Dialysis PATIENT Act included in this issue of the Kidney Citizen. Since many in Congress are focused on the upcoming November elections, we need your help to ensure that they are also paying attention to how they can help dialysis patients. We urge you to sign these postcards and mail them back to us today. Remember, these are postage-paid postcards, so you simply need to drop them o in a mailbox. Once you drop the postcards in the mail, they will go directly to our office in Washington, D.C., where our staff will deliver your messages of support to your legislators, bundled with others from your State and Congressional district. As a patient-led organization working to further empower patients, we are counting on your support. Thank you again for everything you do to help ensure our
Nancy L. Scott
DPC Education Center