April 18, 2026 • Boston Museum of Science

The Rare Perception Project is an interactive art installation that explores how people with rare and complex diseases are seen, heard, and interpreted as they move through the healthcare system.

For many patients, the diagnostic journey is shaped not only by medical testing, but by perception—by how symptoms are described, translated, and filtered through clinical language and social assumptions. A single experience can be understood in multiple ways. A patient might say, “My hands and feet are always cold.” A chart may read, “poor circulation.” A bystander may assume, “malnourished.” Each shift seems small. Together, they can delay care, obscure truth, and deepen isolation.

This project makes those shifts visible.

Using color theory and participatory design, visitors engage with three overlapping “lenses”:

• Patient (orange): lived experience, expressed in personal language
   
• Physician (blue): clinical interpretation shaped by training and systems
   
• Society (purple): cultural judgments and misunderstandings
   

Through hand-held color filters and layered text, participants see how meaning changes depending on who is doing the seeing. The physical act of lifting and changing lenses mirrors the emotional and systemic work patients perform every day as they navigate appointments, referrals, skepticism, and stigma.

The Rare Perception Project is grounded in real diagnostic patterns and documented patient experiences. It does not assign blame. Instead, it examines how structures, language, and unconscious bias shape care—often without intention. By translating these dynamics into a tactile, visual experience, the installation creates space for empathy, reflection, and learning across ages and backgrounds.

At its core, this work asks a simple but essential question:
What becomes possible when we listen without distortion?

By inviting audiences to step into multiple perspectives, The Rare Perception Project highlights the importance of honoring patient voice, improving communication, and building systems that see people more clearly. It aligns with Rare New England’s mission to educate, connect, and uplift the rare disease community, and to advance care through understanding.