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 people worldwide — anyone living with one of the 7,000+ known rare diseases faces the same challenge of finding and understanding the research on their condition.
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
RareWays currently covers 104 rare diseases, with research sourced from PubMed, Europe PMC, ClinicalTrials.gov, bioRxiv, medRxiv, and OpenAlex. We update regularly and are expanding toward the full rare disease spectrum.
Future features include personalised alerts when new research is published, connection to patient advocacy organisations worldwide, and deeper integration with the UNSW Precision Care Initiative and genomics programs.
If your rare disease isn't listed yet, request it here and we'll prioritise adding it.
Our community
RareWays is built in Australia and connected to the rare disease community locally and globally:
- Rare Voices Australia
- Rare Diseases NSW
- UNSW Precision Care Initiative
- Omico — Australian Genomics Cancer Medicine Program
Advisory board
RareWays is guided by people with lived experience and clinical expertise in rare disease.
Mark Latham
Founder
Diagnosed with Giant Cell Tumour of Bone in 2021, Mark built RareWays out of his own experience navigating rare disease research. He brings a background in early-stage technology startups across ANZ and Canada, with a focus on customer success and product-led growth from seed through Series A.
Sydney Stern, PhD, MS
Clinical Advisor
Associate Director of Global Medical Affairs at BeOne Medicines and Director of Giant Cell Tumor Programs at TGCT Support. Founder of the TGCT Registry, Sydney has spent her career bridging drug development, patient advocacy, and rare disease research — with deep expertise in rare tumours and inborn errors of metabolism.
How we work
RareWays aggregates research from peer-reviewed databases — we don't create original medical content. Our editorial policy explains our data sources, AI methodology, update frequency, and how to report inaccuracies.
Read our editorial policyStart exploring the research
Search our directory to find the latest articles and trials for your condition.
Browse diseases