RDLA Advisory Committee Membership Application 2024-2025

The RDLA Advisory Committee is a diverse group of dedicated rare disease patient advocacy community leaders who are committed to ensuring that everyone in the rare disease community has a voice and can make an impact on legislation and policy.

Together with the RDLA staff, the committee works to ensure the advocacy needs of the rare disease community are being served by providing crucial guidance and feedback on RDLA programs and events, participating in advocacy trainings, and speaking at events. The duties of the Committee Members include:

participating in bi-monthly advisory committee meetings,
attending Rare Disease Week on Capitol Hill and other advocacy events,
engaging advocates in the rare disease community on state and federal advocacy, and
sharing information on issues of importance.

The new members of the advisory committee will have a one-year term from November 2024 to November 2025.

To apply, please fill out the application below. A letter of recommendation can be submitted with your application but is not required. If you have any questions, please email Shannon von Felden, Senior Director of Advocacy at the EveryLife Foundation, at svonfelden@everylifefoundation.org.

Question Title

* 1. First Name

Question Title

* 2. Last Name

Question Title

* 3. Email address (this is how you will be contacted regarding your application)

Question Title

* 4. Phone number

Question Title

* 5. Home address

number and street

city

state

zip code

Question Title

* 6. Check which connection to the rare disease community best applies to you.

Patient

Caregiver

Non-profit organization representative

Academic

Healthcare professional

other

Question Title

* 7. Your rare disease affiliation (name of the rare disease or undiagnosed)

Question Title

* 8. Birth Year

Question Title

* 9. Please select your gender.

Female

Male

Non-Binary

Other

Prefer not to answer

Question Title

* 10. Please select the response that best reflects your race and ethnicity.

White (Non-Hispanic)

Black or African American

Hispanic or Latino

Asian or Asian American

Middle Eastern/North African (MENA)

American Indian or Alaska Native

Native Hawaiian or other Pacific Islander

2 or more

Other

Prefer not to answer

Question Title

* 11. Is there a rare disease organization that you are affiliated with? If so, please list the name of the organization.

Question Title

* 12. Please click below on any EveryLife and/or RDLA events or programs that you have been involved in.

Community Congress

Rare Across America

Rare Advocacy Learning

Rare Artist

Rare Disease Week

Rare Disease State Advocacy Day (In Boston, MA; Madison, WI; Columbus, OH; Albany, NY; Harrsiburg, PA)

RareIs Scholarship

RDLA Mentorship Program

Young Adult Rare Representatives (YARR)

Youth and Teen Advocacy Day

Question Title

* 13. How many years have you been involved in Rare Disease Legislative Advocates (attended RDLA webinars, Rare Disease Week, Rare Across America, etc.)? Please enter the number of years.

Question Title

* 14. How many years of advocacy experience do you have overall?

less than 5 years

5 to 10 years

more than 10 years

Question Title

* 15. Describe your involvement and experience as a rare disease advocate. Please include details on what you have worked on as an advocate, events you have attended to advocate and/or learn more about advocacy, organizations that you work with, etc.

Question Title

* 16. Please list any leadership positions you currently hold or have held in the past in the rare disease community or other applicable experiences.

Question Title

* 17. What is an achievement (personal, professional, or advocacy related) you are most proud of? Please describe how that experience has shaped your advocacy or leadership skills.

Question Title

* 18. How do you think your advocacy and/or leadership experience and abilities will benefit the RDLA Advisory Committee and/or RDLA?

Question Title

* 19. Please include a letter of recommendation from an individual who can describe your experience as an advocate. This is not required but encouraged.

PDF, DOC, DOCX, PNG, JPG, JPEG, GIF file types only.

Choose File