Are you ready to take your advocacy journey to the next level?
The RARE Advocate Training Series (previously known as Rare Advocacy Learning) launched in 2021 to provide in-depth education and advocacy training, developing a pathway toward year-round advocacy engagement. This free, six week seminar series for advocates with prior advocacy experience was conceived based on a community survey in 2021. Thank you for sharing your ideas and allowing us to walk alongside you in your advocacy journey. We are honored to be your advocacy partners.
RARE Advocate Training Series and all RARE Advocate events and resources are offered free of charge to patient advocates.
Course Prerequisite
Advocates with prior advocacy experience are encouraged to apply. Experience may include participation in advocacy events, meetings with policymakers, or other activities designed to advance policies impacting the rare disease community.
Accepted participants will be expected to attend virtual live sessions on Mondays from 3:30 to 5:00 pm ET. The recorded sessions will be posted on the virtual learning platform on Mondays and participants have the week to watch the recording and complete the weekly quiz. Participants will need access to a computer and internet to access the virtual learning platform.
Course Focus and Schedule
Core Course
The Spring 2026 seminar series, entitled “The Intersection of State and Federal Policy for Rare Disease Advocacy”, will empower advocates to engage meaningfully in impactful policy change.
Weekly seminars will be 1.5 hours in length and offered in a mix of live and recorded formats between April 20 and June 5. The live seminars will include small breakout sessions. An optional orientation will be held on April 16 from 3:30 to 4:30 pm ET. Participants who complete all five seminars and present a final project will be awarded a certificate of completion.
Core Course Schedule
April 16: Rare Advocacy Learning Orientation (virtual live) optional
Learn more about what to expect from the seminar series and how to engage with the virtual learning platform and fellow participants.
April 20: State and Federal Government 101 (virtual live)
This session will provide an overview on federal government and state government legislative processes and the role of federal agencies in rare diseases.
April 27: Post HR 1 World: Medicaid and Payer Engagement (virtual live)
This session will provide an overview of the access environment, Medicaid, and payer engagement and ways for advocates to get involved.
May 4: Newborn Screening and Diagnostics Policy Issues and Advocacy Efforts (recording)
Learn more about policy and advocacy issues at the state and federal level on newborn screening, genetic testing, and diagnostics.
May 11: Rare Disease State and Federal Access Policy Issues and Advocacy Efforts (recording)
Learn more about access issues impacting rare disease patients including copay accumulators, prior authorization, step therapy, and more.
May 18: Amplifying Your Voice: Panel Discussion with Rare Disease Advocates on the Future of Rare Disease Advocacy (virtual live)
June 1-5: Final project presentations (virtual live)
Participants will present their final project to other participants and RDLA staff on one of the five sessions of the final week. 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.
RARE Advocates Training Series+ Cohort
A program called RARE Advocates Training Series+ is available to a select group of RARE Advocate Training Series participants. This particularly Series is for advocates from diverse backgrounds dedicated to serving under-resourced communities. The 2026 RARE Advocates Training Series+ 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 23 to May 21 at 5pm ET.
In addition to the core course sessions, the RAL+ cohort will meet for an additional seminar per week for 1-2 hours, with a mix of live and recorded sessions. Live sessions will be on Thursdays at 5 pm ET.
RAL+ Cohort Schedule
April 23: Rural Health 101 (virtual live)
April 30: Post HR 1 World (Medicaid & Payer Engagement): Rural Edition (format TBD)
May 7: Newborn Screening & Diagnostics: Policy Issues & Advocacy Efforts (Rural Impact) (format TBD)
May 14: Navigating Conversations in Rural Health at the State and Federal Level (virtual live)
May 21: Introduction to Capstone Project (virtual live)
Participants will be introduced to their final presentation.
Thank you to our RARE Advocate Training Series sponsors
Additional thank you to our RARE Diversity sponsors
Questions? Please contact the Advocacy Team at advocacy@rareadvocates.org.
