Extension of health and community services for people affected by genetic and rare diseases, MEDI.COM-RARE

Project facts

Project promoter:
Victor Babes University of Medicine and Pharmacy, Timisoara(RO)
Project Number:
RO-HEALTH-0018
Status:
In implementation
Initial project cost:
€847,157
Donor Project Partners:
Frambu Resource Center for Rare Disorders(NO)
Other Project Partners
Louis Turcanu Emergency Clinical Hospital for Children(RO)
Prader-Willi Romania Association(RO)

More information

Description

The aim of the project is to develop health policies and services for the prevention of genetic and rare diseases in order to improve access to health care services for affected people, including Roma and people in rural and remote areas, using the Norwegian model.

The MEDI.COM-RARE project continues the exchange of best practices in the field of rare diseases and the development of health institutions and services for patients with genetic and rare diseases in the two countries, thus contributing to the reduction of economic and social disparities in the European Economic Area. The MEDI. COM- RARE addresses a community disadvantaged due to disability caused by rare diseases and isolation, regardless of ethnicity (with the caveat that within the Roma ethnic group there is more co-ancestry and therefore a higher risk for genetic diseases) and aims to ensure the provision of integrated and holistic care services through the use of case management and the creation of support networks in the community, using best practice examples from the Frambu Centre in Norway. The main target group of the project consists of 675 patients with rare diseases (including Roma).

Information on the projects funded by the EEA and Norway Grants is provided by the Programme and Fund Operators in the Beneficiary States, who are responsible for the completeness and accuracy of this information.