Share how you care.

When faced with challenges, it helps to understand you are not alone.

We want to give you a place to share your story and read about others’ experiences living with or caring for a loved one with a rare disease.

Whether you are a family member, caregiver or someone living with a rare disease, sharing your story is a powerful way to connect.

Your Name

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Patient Name (if different)





NOTICE: By clicking the "Submit Your Story" button below, you are giving BioPontis the right to publish this story on the website and share it on social media platforms.