The NAMED Advocates research team have been busy working looking at the conversations, blogs, and postings around rare diseases and conditions. The research team reviewed an extensive body of work, including more than 456 documents analyzed, 267 NIH grants reviewed, and 1,626 PubMed articles reviewed. What came out of these documents and articles are important, noteworthy findings on whose voices are included and whose voices are being left out and underrepresented.
The Dominance of Deficit Language
One of the most evident findings was that a lot of deficit language was dominant in the publicly available documents.
Examples include:
“Suffering from a condition” versus using the asset-based alternative, someone “who has.”
“Abnormal” being used as deficit language versus “variant or difference.”
“Wheelchair bound” versus an asset-based alternative like “wheelchair user.”
A Lack of Community-Led Narratives
It should also be noted that amongst these publicly viewed documents, there was a lack of individuals talking about their actual experiences. This is particularly evident in scientific literature: out of 392 PubMed articles analyzed, not one article was community self-determined, and only one was even community-led. This is despite 38.5% of articles using participatory language with words like “patient engagement,” “community partnership,” and “stakeholder involvement,” according to RETHINKING LANGUAGE IN SCIENCE, How Biomedical Science Talks About Disability And Why It Matters.
The Rethinking Language in Science Project
The NAMED Advocates is continuing to do research around language and building a language framework for those with rare conditions and diseases as part of the Rethinking Language in Science Project. The project is looking to hear, center, and document the stories and perspectives of those living with rare diseases, conditions, and disabilities.
In order to read more of this research or if you have a story to share and have a rare disease, condition, or disability, please feel free to reach us.
Stay engaged and read the full report at https://namedadvocates.org/wp-content/uploads/2026/07/Literature-Review_Rethinking-Lang-in-Science_July-2026.pdf
