Oxalosis and Hyperoxaluria Foundation

04/15/2026

Organ donation saves lives and gives families more time together.

We are grateful to the donors and families who make that possible.

Not registered yet? It only takes a minute: registerme.org

04/12/2026

Their baby needed a liver/kidney transplant to survive.

That transplant—the gift of life from one donor—saved their son’s life.

For some families facing primary hyperoxaluria, organ donation can mean everything.

April is National Donate Life Month. Register to be a donor and give the gift of life: registerme.org

Outside the U.S.? Search "organ donor register + your country" to get started.

03/24/2026

“The phone call I had waited for my entire life came early one morning, from a doctor I had met because both of my kidneys had shut down.
My genetic test came back positive for PH1…
I will never forget the awe in his voice, as if I was a unicorn that had materialized on the other end of the phone.” - Tiffany R, diagnosed at age 41.

Genetic testing matters. Genetic testing saves lives.

03/23/2026

The American Society of Nephrology (ASN) created the Cele's Champions program to bring the patient voice into the conversations that shape the future of kidney care. Named in honor of Cecilia "Cele" Fogarty, who spent years shaping ASN's annual meetings and was known for her commitment to mentorship, the program selects just 10 patients and caregivers living with kidney disease each year to attend ASN Kidney Week 2026 in Denver — with complimentary registration and $1,500 in travel support included.

If advocacy is a meaningful part of your life, we hope you'll consider applying 💙
Applications accepted through April 1 at: asn-online.org/grants/travel/home.aspx

03/21/2026

If a baby or child has a kidney stone, it’s time to look beyond the stone.
It can be a warning sign that something more is going on — and it should always prompt genetic testing.
Early answers mean early action.
Early diagnosis can save kidneys.
It can save childhoods.
If you know a parent who needs to see this, please share.
The sooner we spread the word, the sooner more children can be diagnosed and protected. 💙

03/18/2026

Calling all young advocates.

The Scholarship Fund is approaching its 500th recipient since launching in 2020. Could it be you?

Applications are now open for the RAREis Scholarship Fund. Thanks to the support of Amgen's RAREis program, the EveryLife Foundation for Rare Diseases will award 58 scholarships of $5,000 to individuals in the rare disease community pursuing higher education in Fall 2026.

Learn more and apply at https://hubs.li/Q04756qS0. Application closes April 28 at 2 PM Eastern.

03/17/2026

It took Tiffany 41 years to get answers.
A mom of two, she was finally diagnosed with Primary Hyperoxaluria Type 1 — a rare genetic kidney disease.
Most rare disease patients wait 4–8 years for a diagnosis.
Tiffany waited 41.
Stories like hers are why genetic testing matters.
Earlier answers can change lives — and protect kidneys.
If you know someone navigating unexplained kidney issues, please share this. Awareness can make all the difference. 💙

03/14/2026

🚨 CALL FOR ABSTRACTS! 🚨

The International Hyperoxaluria Workshop happens June 26-27 in Prague, Czech Republic! This is a Professional Workshop Only!

Abstracts must be submitted electronically via the Online Services Portal no later than 1 April 2026. Find full details and a submission link here:

https://ohf.org/international-hyperoxaluria-workshop-2026/abstract-submission-guidelines/

03/13/2026

As a reminder... we have LIMITED TRAVEL GRANTS available for the International Hyperoxaluria Workshop from June 26-27 in Prague!

This is a *Professional Workshop Only* for Clinicians, Researchers Corporate/Industry and Government/Academic attendees!

Travel Grants Application Deadline: April 15, 2026

https://ohf.org/international-hyperoxaluria-workshop-2026/travel-grants/

03/12/2026

Today is World Kidney Day
To our hyperoxaluria community — patients, caregivers, families, and the clinicians and researchers who champion their care — this day is for you.
Living with a rare kidney disease is hard. The uncertainty, the procedures, the waiting, the searching for answers. We see you, and we're honored to stand with you.
On this World Kidney Day, we're grateful for a community that shows up for each other, and we are recommitted to the work that still lies ahead: funding research, connecting patients to care, and one day finding a cure.
You are not alone. 💙

03/10/2026

World Kidney Day is March 12

This World Kidney Day, we’re thinking about the people who are still searching for answers.
For some living with primary hyperoxaluria, years of recurring kidney stones and procedures happen before the true cause is discovered, sometimes only after kidney failure.
Early genetic testing could prevent years of pain and protect kidney health.
In recognition of World Kidney Day, help us spread the word by sharing this post. Earlier answers mean better outcomes.