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The Oxalosis & Hyperoxaluria Foundation is dedicated to the awareness, understanding, and treatment of primary hyperoxaluria, oxalosis, and related hyperoxaluria kidney stone conditions. Our news and events page is designed to help you stay up to date on the latest research breakthroughs, important events, and personal stories that affect the oxalosis and hyperoxaluria community.

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New Clinical Trial Endpoints announced by Kidney Health Initative (KHI) and the Oxalosis and Hyperoxaluria Foundation (OHF)
New clinical trial end points identified by a Kidney Health Initiative (KHI) workgroup, in partnership with the Oxalosis and Hyperoxaluria Foundation (OHF), offer hope for people with primary hyperoxaluria. Today, the US Food and Drug Administration (FDA) has no approved therapies for primary hyperoxaluria. Several pharmaceutical companies are conducting clinical trials for new drug targets in this rare disease and the end points identified in the recent publication in the Clinical Journal of the American Society of Nephrology (CJASN) will catalyze the approval of these new therapies.
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Primary Hyperoxaluria-The Patient and Caregiver Perspective.
Primary Hyperoxaluria-The Patient and Caregiver Perspective. The Kidney Health Initiative, in partnership with the Oxalosis and Hyperoxaluria Foundation, convened a diverse workgroup to identify PH end points that included caregivers of people with PH, pharmaceutical representatives, researchers, and the FDA. The workgroup identified four end points that pharmaceutical companies can use in PH clinical trials. Because of this, people with PH can have hope that new treatments will be developed and approved.
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Primary hyperoxaluria-mapping impact and gaining insights
In September, while attending the Annual 2019 Global Genes Patient Advocacy Summit in San Diego, our RARE Revolution team had the privilege of hosting a roundtable in partnership with Dicerna Pharmaceuticals and the Oxalosis and Hyperoxaluria Foundation (OHF). Rebecca, CEO of RARE Revolution recounts their individual stories and collective experiences. (Page 54-Page 58)
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