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 and make 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.

Which Conditions We Cover

Most conditions on RareWays meet the Therapeutic Goods Administration's orphan threshold, affecting fewer than 5 in 10,000 people in Australia. We also cover a small number of more common conditions, such as multiple sclerosis, where patients and families face the same problem: scattered research, few specialists, and trials that are hard to find.

Data Sources

RareWays indexes journal articles, preprints and trial registry records from the sources below. Inclusion in a database does not establish that a record is peer reviewed or clinically reliable. Plain-language explanations are generated with AI. Our sources are:

• PubMed / NCBI:Biomedical literature indexed by the National Library of Medicine. Indexing does not guarantee peer review.
• 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 built by an automated pipeline that searches PubMed, Europe PMC, OpenAlex, and ClinicalTrials.gov every day using standardised search terms for each disease, then aggregates the results into a structured page.

The pipeline applies automated relevance filters using disease names and configured synonyms. By default, it requires a title match or repeated mentions in the abstract; selected conditions use different rules. Ambiguous abbreviations require disease-specific context. These filters can miss relevant research or include unrelated records, and older records may need rechecking. Duplicates are merged and retracted articles are flagged. Clinical trials are filtered by registration status and matched to the specific disease, and observational studies and registries are listed separately from trials that test a treatment.

Before a new disease page is published, an AI reviewer checks a random sample of its articles and trials and holds the page back if too many are off-topic. Held pages are corrected or reviewed by a person. Routine data updates (new articles and trial status changes) are applied automatically and displayed with a "Data refreshed" date. This is not a clinical review 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 refreshes every disease page daily, with a complete re-check of every source once a week. Each disease page displays a "Data refreshed" date reflecting the recorded data refresh. It does not certify medical review or a change to every record. Delays are shown on disease pages.

Clinical trial statuses are sourced directly from ClinicalTrials.gov and reflect the status at time of last update. Trial status can change, so 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.

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.