Editorial Policy

Our Mission

RareWays exists to ensure no rare disease patient has to navigate their condition alone. We aggregate the latest peer-reviewed research, preprints, and clinical trial data for hundreds of rare diseases — making it free, searchable, and understandable for patients, families, and carers worldwide.

RareWays is not a clinical service and does not provide medical advice. Our role is to surface what the research says — not to interpret its clinical significance for individual patients. All users are strongly encouraged to discuss any findings with their healthcare team.

Data Sources

All content on RareWays is sourced from established, peer-reviewed databases. We do not create original medical content. Our sources are:

• PubMed / NCBI— Peer-reviewed journal articles from the National Library of Medicine.
• Europe PMC— Extended coverage including preprints (bioRxiv, medRxiv) and open-access research.
• OpenAlex— Open scholarly literature, citation networks, and author metadata.
• ClinicalTrials.gov— Active and completed clinical trials registered with the US National Institutes of Health.
• Orphanet— ORPHA disease codes and rare disease classifications (European Reference Network).

How Content Is Generated

Disease pages are produced by Rocky, RareWays' automated research engine. Rocky runs regular sweeps of PubMed, Europe PMC, OpenAlex, and ClinicalTrials.gov using standardised search terms for each disease, then aggregates the results into a structured page.

Rocky applies quality filters: minimum relevance thresholds, deduplication, and exclusion of retracted articles. Clinical trials are filtered by registration status and matched to the specific disease.

Disease pages are reviewed by the RareWays team before first publication. Routine data updates (new articles and trial status changes) are applied automatically and displayed with a "Last updated" date.

AI-Generated Summaries

Where available, RareWays provides plain-language summaries of research articles. These summaries are generated by an AI language model (Claude by Anthropic) from the article's abstract and metadata.

AI summaries are intended to make dense research accessible — not to replace reading the original paper. They may not capture all nuances of the source material. We recommend consulting the original publication (linked on every article card) and discussing findings with a qualified clinician.

AI summaries are clearly labelled as AI-generated wherever they appear.

Update Frequency

RareWays runs regular literature sweeps using an automated pipeline. Each disease page displays a "Last updated" date reflecting when the data was most recently refreshed. The update cadence varies by disease based on publication volume; most diseases are updated at least monthly.

Clinical trial statuses are sourced directly from ClinicalTrials.gov and reflect the status at time of last update. Trial status can change — always verify current status at clinicaltrials.gov before making any decisions.

What We Do Not Do

• — Provide medical advice or clinical recommendations
• — Interpret research findings for individual patient circumstances
• — Create original research or clinical content
• — Accept payment for content placement or sponsored disease pages
• — Share personal health data

Conflicts of Interest

RareWays is an independent project with no pharmaceutical, clinical, or commercial affiliations. Disease pages are not sponsored. Research is surfaced algorithmically based on relevance and recency — not commercial relationships.

RareWays is seeking grant funding from the Medical Research Future Fund (MRFF) to support its ongoing development. Grant funding does not influence which diseases are covered or how research is presented.

Reporting Inaccuracies

If you identify an error, outdated information, or a retracted article on any RareWays page, please submit a correction request. We review all reports and update pages as quickly as possible.

Clinicians, researchers, or patient advocates who identify systematic gaps in our coverage are encouraged to reach out. We welcome expert input.