RARE Foundation Announces 2026 RARE Artist Awardees

Ten artists recognized across six categories will share their stories with national policymakers during Rare Disease Week on Capitol Hill in March 2027

WASHINGTON, Nov. 5, 2026 /PRNewswire/ -- The RARE Foundation, today announced the ten awardees of its 2026 RARE Artist program, celebrating artists who use creativity to share personal experiences with rare diseases to help raise awareness, impact policy, and inspire advocacy. Selected from 244 entries, this year's awardees represent nine states and a range of artistic mediums, including visual art, digital art and photography, music, poetry, and short film.

A panel of judges selected 20 finalists from this year's submissions, and more than 2,300 members of the public participated in voting in October to help determine the awardees across all six categories. This year marks the introduction of the Short Film category, expanding opportunities for artists to tell their stories through new creative mediums.

The 2026 awardees range in age from 15 to 60, reflecting the diverse experiences and perspectives of the rare disease community. Six awardees are age 22 or younger, and two share their perspectives as family members or caregivers of individuals living with rare diseases. Six awardees are participating in a RARE Foundation program for the first time, while four are returning participants, including two former awardees from 2015 and 2024.

"RARE Artists are truly redefining rare! Through painting, poetry, music, film, and so many other creative mediums, these talented advocates are sharing their experiences, challenging perceptions of rare diseases, and showing the world that they are so much more than their diagnoses," said Stephanie Riordan, Senior Director of Patient Programs at the RARE Foundation. "Art also takes storytelling a step further by bringing these experiences to life in a tangible, visual way that can leave a lasting impression when meeting with our lawmakers. It's exciting to see each year how RARE Artists continue to redefine what advocacy can look like and encourage others to share their stories!"

For many participants, RARE Artist is a starting point for advocacy, providing an opportunity to turn personal experience into creative expressions that connect with others and make their voices heard. By translating the realities of rare diseases into tangible works of art, participants help build understanding, challenge assumptions, and bring the human impact of rare diseases into conversations about policy and access to care.

"Being a rare disease advocate is my biggest inspiration for making art, so I am grateful to the RARE Foundation for offering me an opportunity to tell our story and to advocate on behalf of my son and our brain tumor community," said Eugenie Hsu, the inaugural awardee in the Short Film category for the piece Benign is Not Fine. "Short Film is a new media category for the foundation and a new medium for me as well, so I am thrilled and deeply honored to be its first awardee."

Meet the 2026 RARE Artist Awardees

The 2026 awardees and their recognized works are:

2D Visual Art

• Fragments — Kate Thompson, representing the epidermolysis bullosa community
• In My Lungs — Caroline Lewis, representing the cystic fibrosis community
• Still Moving — Ella Tee, sharing a family member's perspective on early-onset Parkinson's disease

3D Material Art

• 17 Shoelaces — Mayme Killeen, representing the Friedreich's ataxia community
• IV Couture — G Shellye Horowitz, representing the hemophilia A and superior mesenteric artery syndrome communities
• Life in Pain — Megan Howard, representing the Behçet's disease and idiopathic hypersomnia communities

Digital Art & Photography

• Color Thoughts — Sarah Larkins, representing the arteriovenous malformation community

Music

• say when — Joanna Mieleszko, representing the lymphangioleiomyomatosis community

Poetry

• What the Fire Could Not Take — Ayan Kalra, representing the myelin oligodendrocyte glycoprotein antibody disease community

Short Film

• Benign is Not Fine — Eugenie Hsu, sharing a caregiver's perspective on craniopharyngioma

What's Next for RARE Artist Awardees

The 2026 RARE Artist awardees' work will be featured during RARE Disease Week, March 2-4, 2027, in Washington, DC. The annual gathering brings together rare disease patients, caregivers, advocates, and community leaders to engage with lawmakers and advance policies that improve the lives of people affected by rare diseases.

By showcasing the awardees' work in this national advocacy setting, the RARE Foundation will help bring personal stories and lived experiences directly into conversations with their members of Congress, demonstrating how creative expression can strengthen advocacy and advance understanding of the rare disease community.

Congratulations to all the 2026 awardees, finalists, and participating artists for demonstrating the power of art to amplify rare disease voices and activate advocacy. For more information about the RARE Artist program and to explore the awardees' work, visit RARE Artist and check out the RARE Artist Instagram.

About the RARE Foundation:

The RARE Foundation is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

To learn more, visit rareadvocates.org and follow us on Facebook, X, Instagram, LinkedIn and YouTube.

SOURCE RARE Foundation