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RDLA Mentorship Application for 2026-2027

In our continued efforts to respond to the needs of patients who are looking for advocacy support, the RDLA Mentorship Program creates a year-round support system for advocates seeking more 1:1 support. The mentorship program aims to support rare disease advocates in their advocacy development and foster a continued role for experienced advocates to better hone their leadership skills.
Mentors and mentees will be matched in the spring of 2026, and work together toward the mentee's advocacy goal throughout 2026 and early 2027. The mentors are advocates who have a background in legislative advocacy leadership, have participated in legislative meetings, and have committed to a year-long mentorship as they are deeply passionate about providing guidance and strengthening our community.
Each mentor has committed to providing 1:1 support for a minimum of 1 year and prepare individuals in various advocacy skill building such as preparation and post support for Rare Across America and Rare Disease Week, help in developing their story, and connecting them to other supports and resources.
If you have any questions, please email Kendly Jones, RDLA Program Manager at kjones@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.What does legislative advocacy mean to you? Why is it important for you to increase your legislative advocacy skills?
17.Do you have a personal advocacy goal you are interested in working with your mentor on?
18.Please provide more information on the goal you would like to work on with a mentor. For instance, list the specific legislation or policy issue, the formal patient role and federal agency/organization, etc.
19.What are you hoping for in a mentor? Is it important to you that they have a similar rare disease, live in the same state or part of the country as you, or reflect your own ethnicity, language, age or gender identity? If there is something specific you are hoping for, it is okay to list it here. We will take this information into account when pairing mentees and mentors but cannot guarantee.
20.The following are required in order to participate in the program. Are you able to commit to the following? Check all that you are able to commit to.
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