Survey on Drug Availability for Rare Disease Patients

The All-Russian Union of Patients together with the All-Russian Society for Orphan Diseases have organized a survey to assess the availability of medical care and medicines for patients with rare diseases in 2025.

The monitoring is being conducted for the sixth time and is timed to coincide with the VIII All-Russian Forum on Orphan Diseases, which will take place at the end of February.

The research aims to obtain an objective picture of the current situation and identify key problems faced by orphan patients and their families. Organizers ask participants to answer carefully, noting: «This is very important for obtaining an understanding of the current state of affairs in the provision of medicines and medical care for the treatment of orphan diseases.»

The survey results will be presented at the forum, then sent to federal health authorities. The data will also be used by patient organizations to protect the rights of their wards. The questionnaire is anonymous and takes no more than 15 minutes. You can complete it until 8 February via the link.