Firefly Fund invites you to share your own rare disease journey to help us shine light on Niemann-Pick Disease Type C and other neurodegenerative genetic diseases that affect children and currently have no cure.

To submit your story, please use the form at the bottom of this webpage. For questions or more information, contact admin@fireflyfund.org.

Submit Your Story

  • Who is this story about? When did their journey with NPC begin? What has been their/your experience living with this rare disease? What was your diagnostic odyssey like? Diagnosis? How has Firefly Fund impacted your family’s life and/or healthcare experience?
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