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May 2022 CKD Insider Newsletter

Welcome to the Chronic Kidney Disease Insider Newsletter. If you are living with chronic kidney disease (CKD) on dialysis, have had a kidney transplant or are helping care for someone who is, this newsletter was created for you and your family! The content is meant to keep you and/or a family member up to date on the latest information to help you manage your health now and in the near future in consultation with your physician.

In this month’s CKD Insider: NKF launches educational animated video series, Feedback request to help artificial kidney developers, Living donor protection news, Kidney transplant allocation calculator updates and your Fun Tip of the Day!


News from Kidney Organizations

NKF Launches Educational Animated Video Series on Chronic Diseases

The National Kidney Foundation (NKF) has launched an educational animated video series on chronic diseases in both English and Spanish. These short videos are designed to help educate people on the connection between kidney disease, cardiovascular disease, and diabetes. Each video is about two minutes long. The videos include:

You can read more about this animated series and the connections between these chronic diseases, here.


Updates to the kidney transplant allocation calculator made effective May 18th. The United Network for Organ Sharing (UNOS) has updated the reference population for the Kidney Donor Profile Index (KDPI). The reference table for converting raw Estimated Post-Transplant Survival (EPTS) to a percentage was also updated. These new references went into effect on May 18th. The KDPI determines the kidney donor risk index across a scale ranging from zero to 100, with lower values associated with the highest quality donors. The updated reference population used to determine the KDPI now includes all deceased kidney donors recovered for the purpose of transplantation in the U.S. in 2021. To learn more about KDPI, check out this video. Every adult kidney candidate on the transplant waiting list is assigned an EPTS score based on a number of factors (e.g., candidate time on dialysis, candidate age, diabetes status, prior solid organ transplants). Like the KDPI, the EPTS range is from zero to 100. Candidates with EPTS scores of 20 or below will receive an offer for kidney transplantation prior to those with higher scores. To learn more about EPTS, check out this video. Read more here.


NKF Announces Partnership with AST’s Living Donor Circle of Excellence program to increase the number of living organ donors. The National Kidney Foundation (NKF) announced its membership and strategic partnership with the American Society of Transplantation’s (AST) Living Donor Circle of Excellence ("Circle of Excellence") program. The Circle of Excellence seeks to increase the number of living organ donors by recognizing employers that provide lost wages while donors recover from surgery. Participation in the Circle of Excellence reflects NKF’s continued commitment to make living donation more accessible to everyone. Living organ donation requires a typical leave of absence of approximately four weeks (ranging from two-to-eight weeks) for a kidney donor. The minimum proportion of wage support is 80%, though companies may elect to support more. AKF grades states based on the living donor protections offered. The American Kidney Fund (AKF) grades how well laws in each U.S. state and the District of Columbia remove financial and insurance barriers for living organ donors. You can view the State of the States: Living Donor Protection Report Card to see where your state ranks.


Your Fun Tip of the Day!

It's Game Time!

Looking for new ideas to help you pass the time during dialysis? If you have a smartphone or tablet you can find many options for simple & fun games that require only one hand! Word games, cards, puzzles and more visually active games like racing cars or finding the prize type games are available that you can play alone or with a friend. If you are a care partner and your loved one is looking for something to do while on dialysis you can easily install these games for them for free. Below is a short list to get you started! Playing alone

Playing with friends

There are of course many more games to pick from, and many web based ones as well. Do an internet search and see what peaks your interest!


Feedback needed for innovators developing kidney replacement therapies

What it is: The Kidney Health Initiative (KHI) is currently developing a Human-Centered Design Toolkit for Kidney Failure to provide researchers, investors, and innovators with a better understanding of the needs of people with CKD and their care partners. Members of the kidney community, especially those with kidney disease, are invited to review the Human-Centered Design Toolkit and provide feedback during the public comment period between now and July 1st, 2022. Public comments can be made here. You can learn more about the Human-Centered Design Toolkit for Kidney Failure and other KHI projects here. Why it's important: This is your opportunity to provide valuable feedback to the innovators who are working on making life better for you or your family member. Getting your input included during the development process is critical for these innovators to create a design that works for your everyday life. It will also give clarity to the funders, regulators, payors and clinicians who are necessary for commercialization and adoption of new treatment options.


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