Extension of health and community services for people affected by genetic and rare diseases, MEDI.COM-RARE
Victor Babes University of Medicine and Pharmacy, Timisoara ·Romania
About this project
<p><span style="font-size: 11pt"><span style="font-family: Calibri, sans-serif">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.</span></span></p> <p><span style="font-size: 11pt"><span style="font-family: Calibri, sans-serif">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).</span></span></p>
Bilateral cooperation results
The partners from the Frambu di Norvegia Center actively participated in all activities stipulated in the project contract, online and face-to-face, and responded to the requests of the partners in Romania. Examples of good practices were taken over both in the organization of the case management courses given and in the organization of the patient groups at the NoRo Center
Project partners
- Frambu Resource Center for Rare Disorders Donor project partner· Norway
- Louis Turcanu Emergency Clinical Hospital for Children Project partner· Romania
- Prader-Willi Romania Association Project partner· Romania