Young Adult Rare Representatives (YARR) Application

Thank you for your interest in becoming a member of the Young Adult Rare Representatives (YARR). Please review YARR's mission and expectations here before completing the application.

After reviewing, please fill out the following information below so that we can determine if YARR is the right fit for you. If you are under age 18, please fill this form out with a legal guardian. If you need this application in an alternate format or have feedback on accessibility, please email YARR Program Manager Laura Romano at lromano@everylifefoundation.org.

Thank you! We look forward to connecting soon.

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* 1. Contact Information

First and Last Name *

Pronouns

Address *

Address 2

City *

State *

ZIP/Postal Code *

Email Address *

Phone Number (mobile) *

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* 2. If you are under 18 years of age, list the contact information for your Legal Guardian.

First and Last Name

Relation

Address

Address 2

City

State

ZIP/Postal Code

Email Address

Phone Number

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* 3. Date of Birth

This program is specific to rare disease community members between 16 and 30 years old. Please enter your birthdate to verify your age.

Date

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* 4. Rare Disease Classification

Individual Diagnosed with a Rare Disease

Sibling

Other Family Member (ex: parent, child, cousin, etc.)

Close Loved One (ex: best friend of someone with a rare disease)

Other (please specify)

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* 5. Which rare disease(s) are you affiliated with? Please use the full name and not an acronym.

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* 6. Which option best describes your gender identity?

Male

Female

Non-binary

Prefer not to disclose

Self-describe below:

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* 7. Do you identify as part of the LGBTQIA+ community?

Yes

Not sure/Questioning

Prefer not to disclose

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* 8. What is your race or ethnicity?

Asian

African American/Black

Hispanic/Latino

Mixed Race

American Indian/Alaska Native

Native Hawaiian/Pacific Islander

White

Other

Prefer not to say

Self-describe below:

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* 9. What is your highest level of education or your current educational pursuit?

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* 10. Is there anything else about your academic experiences, accolades, or goals that you want us to know?

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* 11. Are you already part of a rare disease patient organization?

Yes

Please share which organizations you are involved in.

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* 12. What are your personal goals in rare disease advocacy? Mark all that apply.

Improve my ability to have effective meetings with my elected officials

Improve my public speaking skills

Develop my social media advocacy skills

Build my confidence and find my advocacy voice

Be able to provide accurate legislative information to my community

Improve my professional development

Is there anything else you hope to learn or gain from YARR?

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* 13. Are there any current legislative issues that are important to you that affect the rare disease community?

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* 14. If you already have experience with public speaking, please describe.

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* 15. How did you hear about us?

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* 16. Please share a fun fact for your YARR profile!

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* 17. All members of YARR are asked to create a public YARR profile with a short bio, a headshot, and any links they want to include. Are you comfortable with sharing your online profile to the public YARR website?

Yes, I am comfortable having a YARR profile.

I have questions before deciding.

No, I cannot have a public profile.

Please elaborate if you have questions or are not comfortable.

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* 18. Please upload a headshot for your YARR profile.

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* 19. Please share any social media handles or online publications that you want included beside your YARR profile.

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* 20. By checking this box, you agree to adhere to the EveryLife Foundation for Rare Diseases Code of Conduct.

I agree