August 2025 CKD Insider Newsletter
- one track health
- Sep 3
- 6 min read
Updated: Sep 29
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! The CKD Insider Newsletter provides actionable information for you and your family to help you manage your health in consultation with your doctor.
In this month’s CKD Insider:
Latest News from Kidney Organizations
NKF Patient Empowerment Summit
This is a free patient program that will be held virtually on Zoom as a panel discussion designed to help kidney patients (all stages) and their caretakers learn how to manage their illness and live healthier with kidney disease. Topics to be discussed include Mental and Physical Wellbeing (including diet, exercise, and anxiety), Living Donor Protections and Support (paying for a transplant, lost wages, and insurance), and Modality Options (dialysis at home, in-center dialysis, and kidney transplantation).
Date: September 4, 2025
Time: 6:30 PM – 8:00 PM ET
Register here.
NKF Patient Empowerment Program – “Mouth Matters: Dental Health and Kidney Disease”
Untreated dental issues can lead to infections that threaten overall health—and even delay or prevent kidney transplant eligibility. This virtual Patient Empowerment session is designed to help you learn why good oral health is essential for people with kidney disease.
Hear from medical professionals and patient speakers as they share practical tips, real experiences, and what to expect during the transplant evaluation process.
Date: September 8, 2025
Time: 5:30 PM - 6:30 PM CT
Register here.
PKD Parents Community Meeting
Join fellow Polycystic kidney disease (PKD) parents for an open conversation hosted by the PKD Foundation. This is an opportunity to share stories and connect over the unique challenges and hopes of raising a child with PKD.
Date: September 10, 2025
Time: 7:30 PM - 8:30 PM ET
Register here.
NKF Cincinnati Patient Symposium (Virtual)
NKF Cincinnati is hosting a four-day event designed to educate, empower, and connect kidney patients, caregivers, and advocates. This hybrid symposium features expert-led discussions, interactive workshops, and invaluable learning opportunities.
Virtual Sessions – September 16-18 | 8:30 AM - 9:30 AM (ET) on ZOOM Start your mornings with engaging sessions from leading healthcare professionals covering treatment advancements, self-care strategies, and navigating kidney disease.
In-Person Event – September 21 | 12:30 PM - 5:00 PM (ET) University of Cincinnati Join NKF for an afternoon of insightful discussions, hands-on activities, and opportunities to connect with medical experts, local resources, and fellow patients.
This symposium is free to attend, but registration is required. Don’t miss this opportunity to gain valuable knowledge and be part of a supportive kidney health community!
Date: September 16–18, 2025 (Virtual)
Date: Septemer 21, 2025 (In-Person)
Time: From 8:30 AM ET
Register here.
AAKP 50th National Patients Meeting- Save the date!
The American Association of Kidney Patients (AAKP) is hosting its 50th Annual National Patients Meeting this October. This is a hybrid event, with the in-person component taking place in Fort Worth, Texas. The final agenda has not yet been announced, but it will include speakers from various backgrounds, including medical professionals, government representatives, academic researchers, private industry partners, and non-profit organizations.
Register by September 5th to be entered into a prize drawing.
Apply by September 30th if you’d like to attend but are unable to cover the registration costs, scholarships are available for patients and caretakers.
Date: October 3rd-5th, 2025
Location: In person Fort Worth, Texas and Virtual
Register here.
Advocacy Opportunity: The Living Donor Protection Act, reintroduced in both the House and Senate (H.R. 4582, H.R. 4583, S. 1552), aims to safeguard and encourage living organ donation by:
1. Prohibiting insurance discrimination against donors,
2. Ensuring job protection through FMLA during donation and recovery, and
3. Mandating updated public education on donor rights and protections.
More information from the National Kidney Foundation and how to lend your voice to tell Congress to pass the Living Donor Protection Act can be found here.
Your Fun Tip of the Day
Reconnect and Recharge
When was the last time you reached out to an old friend? Life gets busy, and it’s easy to let months—or even years—go by without checking in. But here’s the fun part: sending a simple “Hey, I was thinking of you!” text, email, or call can spark some fun conversations for both of you. Reconnecting doesn’t have to be about big news—you might just want to swap funny stories or share life’s highlights. But it can also be a lifeline when you’re going through tough times, like managing dialysis or the loss of a job or a loved one. Friends often want to support us—they just need the chance.
Try This Today: Pick one person you haven’t talked to in a while and send them a quick hello. You might be surprised at how good it feels!
FDA Approves Empaveli for Two Rare Kidney Diseases
What it is: The Food and Drug Administration (FDA) has updated the approval of Empaveli, which was initially approved in 2021 to treat a rare blood disease. The FDA has now updated its approval to include two rare kidney diseases: C3 glomerulopathy (C3G) and primary immune-complex membranoproliferative glomerulonephritis (IC-MPGN). The treatment is approved for adults and pediatric patients 12 years of age or older. You can learn more about how Empaveli is prescribed including dosing information here. The approval was granted based on promising data from a Phase III clinical trial.
Why it’s important: There are few treatment options for patients with C3G or IC-MPGN, so this treatment offers a promising new option. If you or a loved one is affected, consult with your physician to determine if this medication is an option for you.
Clinical Trials
A Trial of Felzartamab in Kidney Transplant Recipients With Late Antibody-Mediated Rejection (AMR) TRANSCEND
What it is: A Phase III clinical trial to evaluate felzartamab in kidney transplant recipients diagnosed with late active or chronic active Antibody-Mediate Rejection (AMR).
Why it’s important: AMR is one major cause of kidney transplant rejection. If approved, felzartamab would be the first FDA-approved treatment option for AMR.
If you are interested in participating, find more information here to learn about eligibility and study sites.
Planned Trial to test Tecarfarin for Patients with ESRD transitioning to Dialysis
What it is: People with end stage renal disease (ESRD) have a higher risk of blood clots leading to heart attacks and strokes, as well as increased rates of AFib and venous thromboembolism. This risk rises even further during the transition to dialysis, with elevated chances of heart attack, stroke, and mortality. Cadrenal Therapeutics is planning for a Phase III clinical trial to evaluate Tecarfarin in patients with ESRD transitioning to dialysis.
Why It’s important: Approved anticoagulation therapies are limited for patients with AFib in end-stage kidney disease, who have traditionally been excluded from clinical trials of this class of therapy. If you are transitioning to dialysis, discuss with your nephrologist if this trial is an option for you, and worth your joining.
More information can be found here: https://www.cadrenal.com/.
Latest News
Proposed Changes to End-Stage Renal Disease (ESRD) Prospective Payment System and Quality Incentive Program for 2026
What it is: The Centers for Medicare and Medicaid Services (CMS) is considering a proposed rule update (CMS-1830-P) that would revise the End-Stage Renal Disease (ESRD) Prospective Payment System for 2026. This rule proposes to update the payment rate for renal dialysis services for individuals with acute kidney injury and to make updates to the ESRD Quality Incentive Program requirements, as well as to terminate and modify requirements for the ESRD Treatment Choices Model.
Why it’s important: There are many treatment options for ESRD, including seven types of dialysis. The Medical Education Institute (MEI) submitted a comment to the CMS, advocating for a revised Choice Model that provides a broader range of treatment options. You can read their comment here.
Study data reinforces the benefits of using blood tests to predict kidney transplant rejection
What it is: A Liquid biopsy is a term used to describe looking for markers in a fluid (typically blood) sample, rather than taking an invasive biopsy of an organ. For kidney transplant recipients, organ donor DNA, known as donor-derived cell-free DNA (ddcfDNA), can be detected in the blood of recipients experiencing organ rejection. At the World Transplant Congress in August, researchers from Paris reported clinical trial findings showing that the use of liquid biopsy was highly effective in predicting kidney rejection and reduced the number of invasive biopsies required for monitoring. This study involved 14 different centers across Europe and included thousands of biopsies. Similar trials and non-invasive approaches are being tested worldwide, which were also presented at the World Transplant Congress. For instance, another group presented trial results from the BIOTRAIM trial that showed that a patient’s pre-transplant response to immunosuppressants predicts first-year rejection.
Why it’s important: Monitoring for rejection using non-invasive liquid biopsy can reduce the number of required invasive procedures and enable earlier detection. Earlier detection of rejection can improve care, safety, and health outcomes for donor recipients. Predicting the likelihood of rejection before transplantation can provide crucial information for treatment and support measures tailored to individual recipients.
All conference abstracts are available here. In previous newsletters we have shared new FDA approvals for these ddcfDNA tests.
If you found this informative, please share this with anyone you know that can benefit from staying informed and getting a boost of positivity.
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