In 2024, The NAMED Advocates received a grant to launch Rethinking Language in Science, a multi-year project designed to critically examine how scientific and biomedical language shapes the lives of people living with rare diseases. Our work has always centered advocacy, forward momentum, and a people-first approach — and this initiative reflects our commitment to building resources and spaces that honor intersecting identities.
Why This Project Matters
Language informs how people are treated, understood, and valued — especially within medical and research systems. For disabled people and those living with rare diseases, the words used to describe their conditions often carry implicit assumptions about “normalcy,” ability, and worth. This project asks: What would research look like if the people most affected by this language helped shape it?
Completing the First Phase: A Comprehensive Literature Review
One of the project’s first milestones was the completion of a literature review earlier this year. This foundational report explored critical questions, including:
- How does current scientific language around rare diseases influence perception and treatment?
- What terms or phrases in biomedical research are experienced as exclusionary or harmful?
- How can research language be restructured to better reflect the lived realities of disabled people?
- What possibilities emerge when researchers and community advocates co-create language?
- How do individuals with rare diseases narrate their own experiences, and what truths about power and belonging surface from these narratives?
The review, completed by a consultant with extensive experience in this field, revealed several key findings:
Major Takeaways
Tension Between Disability Models
There is an ongoing and often unaddressed conflict between the medical model’s focus on “fixing” conditions and the social model’s focus on eliminating systemic barriers.
Contrasting Language Frameworks
Biomedical research often relies on deficit-based language, while disabled communities use language that emphasizes identity, autonomy, and lived experience.
A Clear Need for Community-Centered Research
The existing literature shows that people with rare diseases are rarely asked how they want to be described. There is a critical need for research that centers their experiences, needs, and perspectives.
Moving Into the Next Phase
Guided by these findings, The NAMED Advocates began building the next phase of the project, including onboarding a dedicated project manager with deep experience in education, public media, and community-centered work.
An advisory council has also been formed, bringing together disability advocates, rare disease leaders, researchers, and organizers across sectors. This council is now actively collaborating on the project’s goals, ensuring the work reflects a broad range of lived and professional expertise.
What’s Happening Now
The Rethinking Language in Science project has already entered a period of rich dialogue and collective learning. Early conversations, including a recent presentation at a national inclusion conference, highlight the need for cross-sector collaboration and deeper engagement with community truth-telling.
Looking Ahead to 2026
The next year of the project will focus on expanding direct engagement with people living with rare diseases through:
- Community conversations and teach-ins
- Surveys to better understand language preferences and experiences
- Focus groups to create ongoing opportunities for feedback and co-creation
This initiative will continue to build spaces where disabled people — especially those navigating rare diseases — can share their experiences, shape the language used to describe them, and influence the systems that impact their lives.
