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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.
1.First Name
2.Last Name
3.Email address (this is how you will be contacted regarding your application)
4.Phone number
5.Home address
6.Check which connection to the rare disease community best applies to you.
7.Your rare disease affiliation (name of the rare disease or undiagnosed)
8.Birth Year
9.Please select your gender.
10.Please select the response that best reflects your race and ethnicity.
11.Is there a rare disease organization that you are affiliated with? If so, please list the name of the organization.
12.Please click below on any EveryLife and/or RDLA events or programs that you have been involved in.
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.
14.How many years of advocacy experience do you have overall?
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.
16.Please list any leadership positions you currently hold or have held in the past in the rare disease community or other applicable experiences.
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.
18.How do you think your advocacy and/or leadership experience and abilities will benefit the RDLA Advisory Committee and/or RDLA?
19.Please include a letter of recommendation from an individual who can describe your experience as an advocate. This is not required but encouraged.
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