★ OHF Connect
Our OHF Connect webinar is live: “Not All Care is the Same: Inside a Center of Excellence.” CHOP’s Pediatric Kidney Stone Center shares how their multidisciplinary team treats children with hyperoxaluria and complex stone disease.
★ Patient advocacy in action
We are pleased to recognize members of the Global Alliance for their contributions to the development of the UK’s first pediatric National Kidney Patient Survey. The survey provides an important opportunity to incorporate the perspectives and experiences of children living with kidney conditions and their caregivers into efforts to improve the quality of care. Patients and caregivers receiving care from an NHS Renal Team in the UK are eligible to participate in the survey.
★ 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.
Your Impact Starts Here
Whether you give your time or your support, every action moves us forward. Join our community to raise awareness and advocate for those living with Hyperoxaluria, or make a contribution that directly funds critical research and patient care.
★ OHF × CHOP Care Center Webinar
Featuring the Children’s Hospital of Philadelphia, an OHF Care Center of Excellence.
Free to attend.
