One Rare seeks to provide support and opportunities that improve the lives and futures of young adults, aged 18-35, living with rare diseases, through education, mentoring, recreation, and peer engagement. In July 2023,  One Rare is hosting a four day, in-person event in Boston with the theme of “Community Building.” This survey is designed to see if you qualify for the in-person event. If you do, there will be an interview process to learn more about you and your needs to make the in-person event memorable and impactful! If you have any questions, please feel free to put them below or contact us at info@onerare.org.

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* 1. Are you a young adult between the ages of 18 and 35 living with a rare disease?

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* 2. What city and state do you live in?

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* 3. This event has no cost to attend but may require travel. What assistance, if any, would you need to get to Boston MA?

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* 4. Have you attended any of One Rare Experience programs before? 

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* 5. Which topics are you most interested in? (check all that apply)

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* 6. What other community building topics would you like to see in our programs? 

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* 7. Do you need a caregiver to assist with personal care needs?

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* 8. If yes, what type of care do you need support with?
(We can discuss this further in the interview process as well)

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* 9. Do you depend on any devices for mobility, feeding, breathing or anything else that we should know about to make you comfortable?

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* 10. If comfortable sharing, what rare disease or diseases are you affiliated with?

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* 11. Is there anything else you would like to share with the One Rare Experience Planning Committee?

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* 12. Any questions?

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* 13. What is your full name, Email and Phone number

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