Russia has updated its list of rare diseases
The Russian Ministry of Health has published an updated list of rare (orphan) diseases. The current version includes 301 diseases. In the Russian Federation, diseases with a prevalence of no more than 10 cases per 100,000 population are considered rare. The list is compiled and maintained by the Ministry of Health of the Russian Federation and is updated periodically.
What has changed
The latest update added new genetic nosologies to the list, including:
How diseases are included
There is an official procedure for including a new nosology.
A special application form is available on the Ministry of Health website, which can be submitted by experts, scientific organizations, and specialized professional societies for consideration of the inclusion of a disease in the list.
Why is this important?
The inclusion of a disease on the list signifies its official recognition as rare at the state level. This is an important step in further shaping state policy on orphan diseases and developing patient support mechanisms.
What has changed
The latest update added new genetic nosologies to the list, including:
- Dyskeratosis congenita
- Chronic hypoparathyroidism
- Developmental disorder with HNRNPH2
How diseases are included
There is an official procedure for including a new nosology.
A special application form is available on the Ministry of Health website, which can be submitted by experts, scientific organizations, and specialized professional societies for consideration of the inclusion of a disease in the list.
Why is this important?
The inclusion of a disease on the list signifies its official recognition as rare at the state level. This is an important step in further shaping state policy on orphan diseases and developing patient support mechanisms.
