Oxalosis and Hyperoxaluria Foundation

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Oxalosis and Hyperoxaluria Foundation Dedicated to improving the care and treatment and finding a cure for Primary and Enteric Hyperoxaluria

Dedicated to improving the care and treatment of, and finding a cure for Oxalosis, Primary Hyperoxaluria and other hyperoxaluria-related stone diseases.

Day 2 at American Society of Nephrology Kidney Week in Denver - connecting with clinicians, researchers, and some of our...
10/23/2026

Day 2 at American Society of Nephrology Kidney Week in Denver - connecting with clinicians, researchers, and some of our very own PH advocates, while building awareness! 💙



"You all truly make a difference.”"As a parent of two children with PH1, I cannot thank you all enough for all you do fo...
10/13/2026

"You all truly make a difference.”

"As a parent of two children with PH1, I cannot thank you all enough for all you do for our community… Having a group of educated medical experts, including psychologists, coordinating care for patients is critical not just for patients but for the family.”

If you missed our recent webinar, Not All Care is the Same: Inside a Center of Excellence, featuring medical experts from the Pediatric Kidney Stone Center at Children’s Hospital of Philadelphia (CHOP), an OHF Care Center of Excellence, you can watch the full conversation on YouTube.

▶️https://ohf.org/social/

Our latest OHF Connect webinar is now on YouTube!In Not All Care is the Same: Inside a Center of Excellence, medical exp...
10/09/2026

Our latest OHF Connect webinar is now on YouTube!

In Not All Care is the Same: Inside a Center of Excellence, medical experts from the Pediatric Kidney Stone Center at Children’s Hospital of Philadelphia (CHOP), an OHF Care Center of Excellence, share how their multidisciplinary team works together to care for children with hyperoxaluria and other complex kidney stone diseases, while supporting their families along the way.

▶️ Watch the recording here: https://ohf.org/social/

Small moments can still matter.When you're managing appointments, treatments, symptoms, or the uncertainty that can come...
10/07/2026

Small moments can still matter.

When you're managing appointments, treatments, symptoms, or the uncertainty that can come with a rare condition, it's easy to focus on what's difficult.

But sometimes a small moment can help: a good conversation, time outside, a favorite meal, a laugh, or simply a quiet moment to yourself.

What's one small thing that has brought you joy lately?

Share in the comments.

The countdown is on! 💧 Hyperoxaluria Awareness Week Begins November 2. Share. Learn. Give. Speak up.However you particip...
10/04/2026

The countdown is on! 💧

Hyperoxaluria Awareness Week Begins November 2. Share. Learn. Give. Speak up.

However you participate, you can help us Shine a Light on Hyperoxaluria.

Early-career research community: Take note!If your focus is primary hyperoxaluria, enteric hyperoxaluria, or oxalosis, y...
09/29/2026

Early-career research community: Take note!

If your focus is primary hyperoxaluria, enteric hyperoxaluria, or oxalosis, you may be eligible for a OHF–KidneyCure Transition to Independence Grant.

Application submission opens September 21 and closes November 19. For eligibility requirements and more, visit kidneycure.org or email [email protected].

Patient advocacy in actionWe’re proud to recognize Global Alliance members Zain and Rabia Khan, who helped develop the U...
09/25/2026

Patient advocacy in action

We’re proud to recognize Global Alliance members Zain and Rabia Khan, who helped develop the UK’s first pediatric National Kidney Patient Survey. This survey brings the perspectives of young kidney patients and their caregivers into efforts to improve care.

Their seven-year-old son Aly Sher, who lives with PH1, is an impressive advocate, as well! He shared his experience at the recent launch event with researchers and nephrologists from across the UK.

If you are a patient or caregiver receiving care from an NHS Renal Team in the UK, you are eligible to take this survey: https://kidneycareuk.org/get-involved/kidney-patient-survey/

A wonderful example of how lived experience can help shape better kidney care. 💙

Listen In: AI, Advocacy & Life with PH1Eleven years ago, OHF community member Karlien Hollanders’ daughter was diagnosed...
09/23/2026

Listen In: AI, Advocacy & Life with PH1

Eleven years ago, OHF community member Karlien Hollanders’ daughter was diagnosed with PH1 at just two months old.

In a recent episode of The Agentic Patient, a series from the Faces of Digital Health podcast, Karlien shares her experience using AI to help navigate her daughter’s medical records — including what worked, what didn’t, and what she learned along the way. She also speaks to the importance of multidisciplinary care for families navigating a complex rare disease. Visit https://ohf.org/social/.

09/23/2026

Exciting news for the PH1 Community in Serbia!

Oxlumo®, developed by Alnylam Pharmaceuticals, was approved for use in Serbia on September 10, 2026.

Oxlumo is a treatment for primary hyperoxaluria type 1 (PH1) that works by reducing oxalate production and is approved for patients of all ages.

This approval marks an important step toward expanding treatment options and access for people living with PH1 in Serbia. 💙

OHF Connect "Not all Care is the Same, Inside a Center of Excellence" is happening this week!There’s still time to regis...
09/15/2026

OHF Connect "Not all Care is the Same, Inside a Center of Excellence" is happening this week!

There’s still time to register for our conversation with Children’s Hospital of Philadelphia (CHOP) about what happens at an OHF Care Center.

Hear from the CHOP team about how specialists work together to care for children and young adults with primary hyperoxaluria (PH) and other complex kidney stone disorders.

Bring your questions — we’ll have time for an interactive Q&A.

📅 Wednesday, September 16
🕒 12:00–1:00 pm ET
💻 Virtual | Free registration

Still time to register! Visit: https://bit.ly/OHFConnect2026.

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