INFORMATION AND PRACTICAL RESOURCES
Patient support
Find information about a diagnosis, diagnostic programmes and organisations that support patients and families.
Rare disease directory
A guide to the Russian Ministry of Health list, including disease names, synonyms and ICD-10 codes. A listing is a reference resource, not a diagnosis or a guarantee of funding.
Explore the directory → (Russian)Diagnostic programmes
Understand eligibility, possible costs and how to contact programme organisers. A free test may not include sample collection, a consultation or travel.
Find diagnostic information → (Russian)Patient organisations
Find information about patient communities and the types of support they offer. Availability depends on each organisation’s remit and programme rules.
Find patient support → (Russian)Access through Krug Dobra
An introduction to the Russian foundation’s application pathway for eligible children and families.
Read the guide → (Russian)Ask a geneticist
When to seek an appointment, what to bring and why your family’s medical history matters.
Read the answers →These resources are provided for information. Confirm current conditions directly with the organisation responsible and discuss the need for investigations with your treating clinician. Resources described here mainly concern Russia; eligibility should not be assumed to extend to other countries.
