Welcome to the RARE Young Adults Leadership Academy, a series of online classes offered to a select group of young adults in the rare disease community. RARE Young Adults Leadership Academy students will learn about the roles and opportunities for patient representation in policy-making, drug development, and the regulatory process and the steps it takes to enter those roles.
In Fall 2026, the Leadership Academy will introduce rare disease state policy priorities, legislative processes, advocacy tools, and leadership opportunities at the state level.
Meet the RARE Young Adults Leadership Academy Graduates
Who Can Apply?
The RARE Young Adults Leadership Academy is open to young adults between 18 and 30 years old who:
- Have a personal connection to the rare disease community as a patient advocate or as the loved one of someone with a rare disease.
- Are deeply committed to the rare disease community and/or their patient organization’s community.
- Are ready for a leadership role.
Space is limited to create an online experience that has room for learning and collaboration.
Courses require a computer or video phone, access to the Internet and Zoom, and a quiet space to attend.
How do I apply?
Fill out our online application form once registration is open. For any questions or access needs, please email the RARE Young Adults Program at programs@rareadvocates.org.
What are the courses?
The Fall 2026 RARE Young Adults Leadership Academy will feature the following classes, featuring expert speakers who work in the rare disease community, are patient advocates who have served in leadership roles, and/or are past RARE Young Adults Leadership Academy graduates:
- Monday, October 19, 2026 from 6 pm to 8 pm ET
Welcome! Introductions and Syllabus Review
- Monday, October 26, 2026 from 6 pm to 8 pm ET
State Policy and Advocacy 101
- Monday, November 2, 2026 from 6 pm to 8 pm ET
Rare Disease Advisory Councils and State Coalitions
- Monday, November 9, 2026 from 6 pm to 8 pm ET
Professional Leadership and Career Opportunities
- Monday, November 16, 2026 from 6 pm to 8 pm ET
Addressing State-by-State Inequities
- No Class on Monday, November 23, 2026 and Monday, November 30, 2026
- Monday, December 7, 2026 from 6 pm to 8 pm ET
Capstone Presentations
What is the Capstone Project?
Each student will choose a rare disease policy issue and create an action plan to address this issue in their home state. Some independent research as well as independent informational interviews may be needed, with support from RARE Young Adults program facilitators. Students will polish a resume and cover letter with professional development guidance and present for five minutes on the issue they have selected, and the action plan they have created. Presentations are the last day of class.
Examples of policy issues include:
- Newborn Screening and RUSP Alignment
- Rare Disease Advisory Councils
- Medicaid Community Engagement Requirements
- H.R. 1 Implementation
- Genetic Non-Discrimination
- Prior Authorization
- Telehealth Access
- Medical Nutrition Coverage
Applications for the Fall 2026 RARE Young Adults Leadership Academy are now closed. All applicants will be notified of the status of their application by late September.
Class of Spring 2026
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Camryn Berry
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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Tyler Healy
Capstone: Intern/Staff for a Member of Congress
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Ben McMackin
Capstone: PCORI Advisory Panel
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Sophie Melancon
Capstone: FDA Patient Representative Program
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Sophia Moore McCoy
Capstone: NIH Advisory Council
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Corben Parker
Capstone: Director’s Advisory Group on Rare Disease in Ohio
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Matthew Peck
Capstone: Intern/Staff for a Member of Congress
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Ashley Percifield
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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Brianna Smith
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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Kobe Warner
Capstone: Board of Directors Member for a Rare Disease Patient Organization
Class of 2025
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Madison Bowe
Capstone: National Advisory Committee on Individuals with Disabilities and Disasters
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Sarah Grace Cattell
Capstone: PCORI Advisory Panel
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Gabrielle Lewis
Capstone: Newborn Screening Advisory Committee
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Carol Shea Linton
Capstone: South Carolina Rare Disease Advisory Council
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Nate Milam II
Capstone: PCORI Advisory Panel
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Bailey Miller
Capstone: Patient Engagement Coordinator at a Rare Disease Organization
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Ivy Morin
Capstone: Department of Defense Congressionally Directed Medical Research Program (DOD CDMRP)
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Natalia Pozuelo-Arbide
Capstone: Intern or Staff for a Member of Congress
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Sofia Treviño
Capstone: Patient Advocacy Role at a Biopharmaceutical Company
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Megan Wolf
Capstone: Public Policy Fellow/Intern for a Biopharmaceutical Company
Class of 2023
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Madison Austin
Capstone: Board of Directors Member for a Rare Disease Organization
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Royze Cachero
Capstone: NIH Advisory Council
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Jonathan Cappiello
Capstone: Statewide Newborn Screening Database
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Kathryn Cowie
Capstone: VA Rare Disease Advisory Committee
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Erin Danzer
Capstone: Board of Directors Member for an Adaptive Fashion Company
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Clio Lang
Capstone: FDA Patient Representative Program
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Seamus Lindblom
Capstone: Student Advocate at the Campaign for Trauma Informed Policy and Practice
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Isabella O’Shea
Capstone: NIH Grant Reviewer
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Justice Rickenbach
Capstone: Public Policy Internship at a Rare Disease Patient Organization
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Charlie Riesebeck
Capstone: FDA Patient Representative Program
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Evangelos Sarantinos
Capstone: Public Affairs Role at a Rare Disease Patient Organization
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Sarina Smith
Capstone: HDYO Executive Committee
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Hannah Zook
Capstone: Protection and Advocacy Agency for Assistive Technology at the Administration for Community Living
Class of 2022
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Norah Carter
Capstone: Public Policy Intern for a Patient Organization
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Tai Chou-Kudu
Capstone: World Federation of Hemophilia Data and Demographics Committee
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Rachelle Cook
Capstone: FDA Patient Representative Program
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Amelia Hartley
Capstone Topic: Indiana Rare Disease Advisory Council Formation
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Carter Hemion
Capstone: Washington Rare Disease Advisory Council
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Jordan Howard
Capstone: Newborn Screening Advisory Committee
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Eimile McKinnon
Capstone: FDA Patient Representative Program
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Matthew Pearl
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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William Romero
Capstone: Intern for a Member of Congress
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Anna Seaman
Capstone: Department of Defense Congressionally Directed Medical Research Program (DOD CDMRP)
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Anneliese Williams
Capstone Topic: Indiana Rare Disease Advisory Council Formation
Class of 2021
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Leeya Alperin
Capstone: Quality and Safety Committee at a Children’s Hospital
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Evren Ayik
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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Christina Brundage
Capstone: FDA Patient Representative Program
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Gwynne Dulaney
Capstone: Patient Advocacy Specialist at a Pharmaceutical Company
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Billy Ellsworth
Capstone: Public Policy Fellow/Intern for a Biopharmaceutical Company
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Riese Goerlich
Capstone: Patient Lobbyist
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Abbey Hauser
Associate Director of Community Engagement
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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Sophie Meskis
Capstone: Board of Directors Member for a Rare Disease Patient Organization
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Dan Pezzetta
Capstone: Newborn Screening Advisory Committee
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Kendall Rump
Capstone: Department of Defense Congressionally Directed Medical Research Program (DOD CDMRP)
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Shandra Trantham, PhD
Capstone: Public Policy Fellow/Intern for a Biopharmaceutical Company
