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RDLA Rare Advocacy Learning 2026 Application

Rare Disease Legislative Advocates (RDLA) will host Rare Advocacy Learning, a seven-week seminar series, in Spring 2026. This series will take place April 20 to June 5, 2026. Rare disease advocates with some prior advocacy experience interested in applying to participate should fill out the application below by March 20, 2026. Including a letter of recommendation with your application is recommended but not required.

The course will include:
  • An orientation on April 13 at 4-5 pm ET.
  • Five weekly 1.5 hour seminars on “The Intersection of State and Federal Policy for Rare Disease Advocacy” including presentations by experts and small breakout groups.
  • Hosted virtually, a hybrid of live and pre-recorded webinars on Mondays from 3:30 to 5:00 pm ET.
  • Participants will present their final project the week of June 1.
  • No class the week of May 25 to give participants time to work on their final project.
For the final project, participants will choose one policy issue or problem that can be addressed through a form of legislative advocacy. Using their advocacy experience and learnings, participants will create a plan outlining the problem, solution through advocacy, and the steps to achieve the goal.

In order to receive a certificate of completion for the program, participants must attend all of the classes, complete a final project, and present the final project.

Applicants will be notified April 10 on the status of their application.

If you have any questions, please email Shannon von Felden, Vice President 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 and the course)
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.Do you require assistance or accommodations in order to participate? If so, please explain for our organizers. 
12.Have you participated in Rare Disease Week, Rare Across America, or another rare disease or patient organization’s lobby day before (at the state or federal level)?
13.If you advocated or lobbied with another organization, what is the name of the organization? Fill in the box.
14.What years did you attend Rare Disease Week, Rare Across America, or another state and/or federal advocacy event? (If 1-3 times, list the years, if more, enter a time period)
15.How many times have you met with your state and/or federal legislators in the past?
16.What are your top 3 policy/legislative priorities? Choose from the following and choose at most three.
17.Describe your rare disease advocacy experience up to this point.
18.What do you hope you will learn and take away from the Rare Advocacy Learning Seminars?
19.What is an achievement (personal, professional, or advocacy related) you are most proud of?
20.How do you think Rare Advocacy Learning will impact your future advocacy efforts?
21.A program called RAL+ is available to a select group of Rare Advocacy Learning participants. RAL+ is for advocates from diverse backgrounds dedicated to serving under-resourced communities. The 2026 RAL+ cohort has an emphasis on the rural rare disease population. Sessions include education and discussions on advocacy and policy related to rural communities. RAL+ requires being able to meet via Zoom every Thursday from April 23rd to May 21st at 5pm ET.
22.If you indicated interest in being considered for the RAL+ cohort, please share:
1) why you are interested in learning about the rural rare disease population and rural health policies
2) how this opportunity will benefit your personal and professional growth.
23.The final projects will be presented in small groups the week of June 1st. Please indicate which days of the week you would be able to present on. You may choose more than one.
24.Please include a letter of recommendation from an individual who can describe your experience as an advocate.
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