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🧬 Help Us Shape the Rare Journey App

Rare Journey is a new digital tool we're designing to support people impacted by rare diseases — families, carers, and clinicians alike.

We're in early development and want your input to make sure we're building something truly useful and respectful of your needs.

This short survey takes less than 2 minutes. 💜

1. What is your connection to rare disease?*

Select all that apply

2. How do you currently manage or track health information?*

Select one

3. Would a single app that helps track symptoms, share insights, and connect to trusted info and stories be useful to you?*

Select one

4. What features would matter most to you?*

Select up to 3

5. Would you feel comfortable if your data (fully de-identified) was used to improve AI tools to support other families and clinicians?*

Select one

6. Would you like to be contacted for early access or testing opportunities?

Optional