Built by someone who needed this.
RareWays was created by Mark Latham — a rare disease patient and health technology professional based in Australia.
The diagnosis that started everything
In 2021, Mark was diagnosed with Giant Cell Tumour of Bone (GCTB) — a rare, locally aggressive bone tumour. Like most people with rare diseases, he faced the same challenge: finding reliable, up-to-date information about his condition was genuinely difficult.
Medical literature is scattered across dozens of databases. Clinical trials are hard to find and harder to interpret. Research papers are written for specialists, not patients. And the systems meant to help — hospital libraries, Google searches, Facebook groups — weren't built for this problem.
Mark had a background in healthtech and health AI. He started building tools for himself, then realised this was a problem shared by millions of Australians — the 2 million people estimated to be living with one of the 7,000+ known rare diseases.
RareWays is the result.
What we're building
A research directory that works for patients
Curated journal articles, preprints, and clinical trials from PubMed, Europe PMC, bioRxiv, medRxiv, OpenAlex, and ClinicalTrials.gov — gathered automatically and updated regularly.
Plain English explanations
Our "Explain Simply" feature uses AI to translate any research article into language that doesn't require a medical degree. Warm, accessible, and honest about what the research does and doesn't say.
An honest information resource
RareWays is a research directory, not a medical service. We help you understand the science. We never give medical advice, and we always point you back to your healthcare team for decisions about your care.
What's coming
This is version one of RareWays. We're starting with 11 rare diseases, with plans to expand to the full Rare Voices Australia directory of 400+ conditions.
Future features include personalised alerts when new research is published, connection to Australian patient advocacy organisations, and deeper integration with the UNSW Precision Care Initiative and Omico genomics programs.
If you have a rare disease not yet listed, or want to get involved, we'd love to hear from you.
Our community
RareWays operates within Australia's rare disease community, with connections to:
- Rare Voices Australia
- Rare Diseases NSW
- UNSW Precision Care Initiative
- Omico — Australian Genomics Cancer Medicine Program
Start exploring the research
Search our directory to find the latest articles and trials for your condition.
Browse diseases