OHF Community Stories
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Share Your Story
Sharing your story is one of the most powerful ways to create change. When individuals and families speak openly about life with hyperoxaluria, those experiences extend far beyond our own community. They build understanding, increase awareness of rare diseases, and remind the world that every diagnosis represents a person, a family, and a future worth fighting for.
The OHF Share Your Story campaign is a long-term effort to center lived experience and amplify patient and family voices. Stories will be featured on the OHF website and shared through newsletters and social media, reaching audiences well beyond hyperoxaluria. Over time, these narratives help reduce isolation, inform advocacy, and make rare diseases more visible and understood.
To share your story:
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Share your first name and a brief reflection on your experience with hyperoxaluria—your journey, your family’s story, or why raising awareness matters to you. Or, you could provide a sentence or two in response to one of these questions: What’s been the hardest part of your journey? What helps on difficult days? What do you wish others understood?
- Upload a photo of yourself or your family/group (optional).
Each story shared amplifies patient and family voices, expanding awareness and understanding while helping shape the conversations, priorities, and systems that affect rare disease communities.
