GENOME INFORM · INFORMATION CHANGES LIVES
Rare diseases. Medical genetics. Patient voices.
Reporting on research, access to care and the people behind the diagnosis.
Genome Inform is a registered Russian news agency covering medicine, science and healthcare policy, with a particular focus on rare and inherited diseases. Our English edition brings selected reporting to readers beyond Russia and explains the context behind it.
Understand the story
Explore research, healthcare systems and the experiences of patients and families. We explain what findings mean, what remains uncertain and where the information comes from.
About Genome Inform →Find your way after a diagnosis
Start with our patient support guide, questions for a clinical geneticist and an introduction to resources available in Russia.
Patient support →Connect across borders
We welcome conversations with researchers, clinicians, patient organisations and international rare disease initiatives.
International cooperation →How the English edition works
Our permanent information pages are being adapted for English-speaking readers. News is selected for international relevance: research, emerging therapies, access to medicines, patient experiences and cross-border cooperation. The Russian edition remains our full news archive.
