Mar. 2026 Newsletter
PKD-Free Babies Grant Program Resource
Drawing from common applicant inquiries, we have enhanced our grant application webpage with a new FAQ section.
View the new listing to learn about instances of partial insurance coverage, grant funding time constraints, and more.
Have a question not addressed by our website? Email our staff: helpingfamilies@pkdfree.org
Confirming PKD Through Genetic Testing
Confirming a suspected diagnosis of polycystic kidney disease is important because it guides appropriate monitoring and treatment, helps identify at-risk relatives, and informs family planning decisions (including eligibility for our grant program).
Genetic testing can provide a definitive diagnosis by detecting mutations in genes associated with PKD, and is especially helpful in cases where imaging results are unclear or there is no known family history.
One common genetic testing provider for suspected PKD patients is Natera's Renasight™.
Using a simple blood or saliva sample, Renasight analyzes 397 genes linked to kidney disease, including those associated with PKD, giving individuals clearer answers about their diagnosis and what it may mean for their family.
Visit our website to read more about Renasight, download an educational brochure, and learn how to order a testing kit.
Awareness and Advocacy Opportunities
In honor of National Kidney Month, the following are ways members of the PKD-Free community can help spread word about Alliance efforts and take action to support meaningful legislation:
We are currently seeking volunteer Ambassadors to share educational flyers about our grant program with their nephrology, reproductive, and/or fertility care provider(s). If you are interested in helping, please email Alliance CIOO Kevin Schnurr: ks@pkdfree.org
Living organ donors are true heroes. While many states have passed protections for these individuals, coverage remains inconsistent. The Living Donor Protection Act of 2025 is a federal, bipartisan bill that protects living organ donors from insurance discrimination, ensures access to job-protected leave for recovery, and promotes public awareness of living donation. The Senate's Committee on Health, Education, Labor and Pensions passed the bill in late February bringing it closer to a full Senate vote. Click here to virtually send your legislators a customizable note expressing your support.
Research Roundup
A recent article in Frontiers in Medicine outlined a two-year study of tolvaptan usage in Chinese ADPKD patients. The medication was well-tolerated and effectively slowed kidney volume growth in those with rapid disease progression.
A study published in Urology Practice analyzed a cohort of over 800 ADPKD patients who underwent nephrectomy (partial or full removal of a kidney) in order to help doctors best counsel patients about this procedure.
Research featured in Cell Death & Disease found that a specific cellular pathway plays an important role in the development of ADPKD by contributing to inflammation and the growth of renal cysts.
Follow PKD-Free Alliance's X account to be the first to know about scientific announcements and newly published research. Note: You may need to sign in to your X account to see our posts.
