Firefly Fund invites you to share your own rare disease journey to help us shine light on rare 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

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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      In these standard Terms and Conditions, “Your Content” shall mean any audio, video, text, images, or other materials you provide. By providing your content, you grant Firefly Fund permission to use, reproduce, adapt, modify, publish, translate, and distribute it in our marketing materials and to the media. Your content must be your own. When you submit content or information to Firefly Fund, it means that you are allowing the public to access and use that information, and to associate it with you. Firefly Fund reserves the right to remove your content at any time, without notice. We take your privacy seriously. Subject to the terms and conditions above, Firefly Fund will not sell or disclose your personal information.