Breaking the Cycle: A Family’s Journey Through Polycystic Kidney Disease
Editor’s Note: Patient Worthy is honored to share this patient story, which comes to us from our partners at PKD-Free Alliance. Polycystic kidney disease (PKD)
PKD-Free Alliance
PKD-Free Alliance
Who We Are & Our Mission
PKD Free Babies Alliance, Ltd. (PKD-Free Alliance) is a 501(c)(3) non-profit organization dedicated to ending Polycystic Kidney Disease (PKD) by using proven approaches to prevent it from being passed down to future generations. The organization was started by Richard Kellner in memory of his late wife, who had PKD.
What is PKD?
PKD is a genetic disorder that results in cysts on the kidneys and is the fourth leading cause of kidney failure in the United States. It is the leading cause of kidney failure in individuals under the age of 50. Affecting over 600,000 Americans, PKD carries a 50% chance of being passed to the next generation in the dominant form of the disease.
How We Help Affected Families
The Alliance provides qualified PKD-impacted families with resources, grants, and discounts from top fertility centers nationwide for Preimplantation Genetic Testing (PGT-M) and In Vitro Fertilization (IVF) treatments. Collectively, this allows PKD-impacted individuals to help actualize a PKD-Free future. The PKD-Free Babies initiative was launched in July 2023.
Success Stories
Since the start of the PKD-Free Babies program in July 2023, the Alliance has received over 150 applications for grants from families seeking to have PKD-Free children. More than 80 are in various stages of pursuing generational health for their families. As of June 2025, supported families have welcomed 14 PKD-Free babies into the world.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Resources & Support
Patient Worthy Posts on PKD
Investigational Treatment for ADPKD Earns FDA’s Orphan Drug Designation
Approximately 540,000 individuals in the United States have been diagnosed with autosomal dominant polycystic kidney disease (ADPKD). The disease causes persistent and rapidly accumulating cysts
New Validated Tool Assesses ADPKD Pain
Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable
Cubs Fan with PKD Goes to Wrigley Field in Search of Kidney Donor
When Christine Todd learned that her kidneys were failing, she was frightened and concerned. Todd has polycystic kidney disease (PKD), an inherited condition characterized by
FDA Grants Orphan Drug Designation to Oxypurinol for ADPKD
In February 2023, I spoke with Dr. Allen Davidoff of XORTX Therapeutics Inc. (“XORTX”) about the company’s commitment to developing therapies for people living
Rare Community Profiles: PKD Foundation and IQVIA Partner to Create Next-Gen ADPKD Registry
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community,
