RareSeen rareseen.org
RareSeen (罕见病知识库) is an independent, non-commercial rare disease knowledge base for Chinese-language readers. It covers all 11,645 rare disease entities in Orphanet, adds Chinese disease names and Chinese phenotype terms, and maps them to China's National Rare Disease Catalog. For the 207 catalog diseases it also lists clinical trials recruiting in China, drugs named for the disease in China's National Reimbursement Drug List, and drugs approved in the EU or the US.
Every item cites its source. The site produces no medical conclusions of its own; it makes information that is already public easier to find in Chinese.
Figures as of the build on 2026-10-05. The site is rebuilt every week from upstream sources. Counting rules are given on the sources and methods page.
What is only available here
- China catalog to ORPHAcode mapping. Chinese rare disease policy documents are indexed by catalog number and Chinese disease name. Global research, drug and trial data are indexed by ORPHA, MONDO and OMIM identifiers. This table connects the two, for all 207 catalog diseases, and is free to download as TSV and JSON under CC BY 4.0.
- The access gap. 80 catalog diseases have a drug approved in the EU or the US, while China's National Reimbursement Drug List names no drug for them. Approval abroad does not mean a drug is available in China, and not being named in the list does not mean a drug cannot be reimbursed; the site states both limits on every page where the figure appears.
- Trials that exist elsewhere but not in China. 192 catalog diseases have recruiting trials outside China; 71 of them have no recruiting trial in China at all.
What is in Chinese only
The 11,645 disease pages and the clinical trials page
are in Chinese. Each disease page carries the English disease name, the ORPHAcode and
links to Orphanet, OMIM, MONDO and GARD, so you can find a page by English name or code
using the search box on the Chinese home page. Page addresses
follow the pattern /d/orpha-<ORPHAcode>, for example
/d/orpha-324 for Fabry disease.
What this site is not
- It is not medical advice, not a diagnostic tool, and offers no consultation.
- It does not sell, source or broker any drug.
- It does not raise money and takes no donations.
- It collects no patient data. There are no accounts, no forms and no tracking.
- It is not an institution. It is maintained by one person; see About.
RareSeen (rareseen.org) is not affiliated with the RareSeen wallpaper apps or rareseen.com, an unrelated company that shares the name.