Celebrating the 2026 RARE Artist Awardees and Their Impact

RARE Foundation's 2026 RARE Artist Awardees

On November 5, 2026, the RARE Foundation revealed its ten awardees for the 2026 RARE Artist program. This initiative honors artists who utilize their creative talents to advocate for awareness and understanding of rare diseases, thereby influencing policies related to health and care access. This year, they selected the awardees from a remarkable pool of 244 entries submitted from across nine states, representing a variety of artistic mediums including visual art, digital photography, poetry, music, and even short films.

A panel of judges whittled down the submissions to 20 finalists, and the public had the opportunity to vote in October for their favorites. This year's awards not only spotlight the importance of creativity in advocacy but also introduced a new Short Film category, allowing for diverse storytelling techniques.

The 2026 awardees span a wide age range from 15 to 60, signifying the varied perspectives within the rare disease community. Notably, six of these artists are younger than 22, and two of them are caregivers to individuals living with rare diseases. This blend of perspectives enriches the narratives being shared, making the stories more compelling and relatable. Among the awardees, six are participating for the first time, while four are returning participants, including two former awardees from 2015 and 2024.

Stephanie Riordan, Senior Director of Patient Programs at the RARE Foundation, expressed excitement about the depth of stories told through art. She stated, "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."

The power of these artists lies not just in their talent but in their unique ability to transform personal experiences with rare diseases into resonant artwork that captivates audiences and lawmakers alike. As Riordan points out, art has a remarkable capacity to translate complex experiences into tangible, impactful narratives that can foster understanding and advocacy during crucial discussions with lawmakers.

For awardee Eugenie Hsu, being a rare disease advocate is what inspires her art. She remarked, “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.” Hsu is the inaugural awardee in the Short Film category for her work titled Benign is Not Fine, demonstrating the powerful intersection of art and advocacy.

Meet the 2026 RARE Artist Awardees

The awardees and their recognized works include:
1. 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

2. 3D Material Art
- 17 Shoelaces – Mayme Killeen, representing the Friedreich’s ataxia community
- IV Couture – G Shellye Horowitz, representing hemophilia A and superior mesenteric artery syndrome communities
- Life in Pain – Megan Howard, representing the Behçet’s disease and idiopathic hypersomnia communities

3. Digital Art & Photography
- Color Thoughts – Sarah Larkins, representing the arteriovenous malformation community

4. Music
- say when – Joanna Mieleszko, representing the lymphangioleiomyomatosis community

5. Poetry
- What the Fire Could Not Take – Ayan Kalra, representing the myelin oligodendrocyte glycoprotein antibody disease community

6. Short Film
- Benign is Not Fine – Eugenie Hsu, sharing a caregiver's perspective on craniopharyngioma

Future Events and Advocacy

The works of the 2026 RARE Artist awardees will be showcased during RARE Disease Week from March 2-4, 2027, in Washington, DC. This annual gathering is vital as it brings together individuals affected by rare diseases, caregivers, advocates, and community leaders to engage actively with lawmakers and underscore the importance of improving policies that impact their lives.

By placing the artists’ works front and center in this national advocacy forum, the RARE Foundation aims to connect personal narratives with legislative discussions, reinforcing how creative expression can heighten awareness and foster a deeper understanding of the challenges faced by the rare disease community.

In conclusion, the RARE Foundation congratulates all the 2026 awardees, finalists, and participating artists. Their creative efforts not only amplify the voices of those affected by rare diseases but also contribute significantly to the larger advocacy efforts for better health outcomes and policy reforms. To explore more about the RARE Artist program and view the awardees' works, visit the RARE Artist website and follow their journey on social media.