Research Centre for Medical Genetics
115522, Moscow,
Moskvorechye st., 1
Reception
+7 (495) 111-03-03
Mo-Fr: 9:00 - 17:00
Рус

RCMG is a member of the Orphanet Consortium

RCMG is a member of the Orphanet Consortium

The Orphanet Consortium (www.orpha.net) was created in 1997 in France as one of the projects of the EU program to support patients with orphan (rare) diseases, improve diagnostic methods and develop innovative approaches to the treatment of these diseases. In 2000, Orphanet opened an information portal on rare diseases and treatment. Today it is the largest consortium providing information in 8 languages.

Orphanet resources are intended for doctors, patients and their relatives, public organizations, researchers, biotechnological and pharmaceutical companies, public health institutions and research centers, as well as public authorities. RCMG is the only Russian organization authorized to develop a national website of the Orphanet portal in Russian and adapt the accumulated medical and scientific information to the needs of a Russian-speaking audience.

Academic collaborations

Academic collaborations

Since 1987, Research Centre for Medical Genetics takes part in WHO Collaborating Centre for the Prevention of Hereditary Diseases to support capacity building for genomics and genetics health services in the European Region, to work with WHO to implement WHO Global strategy on Genomics and to support adapting genetic services into primary health care at national level. 

Since 2002, Research Centre for Medical Genetics has been a member of the largest European hematology association European LeukemiaNet (ELN). As part of the collaboration, the Center’s employees participate in the Annual Symposium of the European LeukemiaNet (Mannheim, Germany) as experts in the diagnosis and monitoring of treatment of myeloproliferative neoplasia, annually participate in conferences, round tables and schools for young scientists.

Since 2007, RCMG has been collaborating with the European Cystic Fibrosis Society to manage and update The European Cystic Fibrosis Society Patient Registry.

Since 2012, the Center has been participating in the Clinical and Functional Translation of CFTR (CFTR2) project to update project’s database of CFTR gene variants in patients with cystic fibrosis. The database is available at http://www.cftr2.org.

Since 2014, Research Centre for Medical Genetics is one of the collaborators in the EpiRare program (European Platform for Rare Disease Registries, European Platform for Rare Disease Registers).The main goal of the program is to support registries and databases of rare diseases for epidemiological purposes, which should lead to a breakthrough in the diagnosis of rare diseases. EpiRare website http://www.epirare.eu/.