Description
Less than 10,000 out of 1.1 million people with rare diseases are counted by official statistics due to the lack of monitoring and limited registration. These people are isolated and exposed to social exclusion and lack the services needed to increase the quality of life. The objectives of the projects are: 1. To strengthen the role of NoRo Center as social services provider, for 360 people affected by rare diseases in Romania; 2. To implement a mentoring program with Frambu Center for RD in Norway; 3. To develop and asses an innovative approach to ensure continuity of care for patients with rare diseases - creating a reference network at national level. The project aims to improve the access to specialized social services for people affected by rare diseases and their families through the development of integrated and specialized services organized in a national reference network for rare diseases. The project will also provide specific therapies in the native language of Hungarian minority. The limited access of Roma patients to diagnostic and services will be approached in the activities concerning the development of the reference network for rare diseases.
Summary of project results
Less than 10,000 out of 1.1 million people with rare diseases are counted by official statistics in Romania, due to the lack of monitoring and limited registration. These people are isolated and exposed to social exclusion and lack the services needed to have a good life. The goal of the project was to improve the access to specialised social services for people with disabilities caused by rare diseases in Romania. The partnership relationship with Frambu Center Norway was consolidated through a mentoring programme and the participation of 5 representatives of the partner in two workshops. As a follow up, the activity of the NoRo Center run by the promoter was reorganised by introducing a range of summer camps services, for increased socialisation among beneficiaries. Three summer camps were organized for 152 patients and carers. Four groups of patients’ representatives (47 participants) were organised to evaluate the needs of patients with rare diseases and existing services in different regions of the country and to set common objectives. The research capacity of the Center was improved by hiring a geneticist and developing five research projects in the field of rare diseases. The database run by the center was improved with information materials about 45 rare diseases, in order to support the Helpline for patients and specialists. Over 260 people received information on rare diseases through the Helpline (in Romanian and Hungarian). Information visits about rare diseases and services available were organised in all 8 regions of Romania (240 participants). Four meetings with other services in the community (70 participants) were organised in order to ensure continuity of care and improve the lives of children with autism spectrum diseases. As part of the efforts to establish a reference network for rare diseases, five partnerships were signed with Health Care providers, aiming at ensuring continuity of care for patients with rare diseases at national level. Four meetings of the working group for developing complementary services with the Expertise Centres from Romania were organised. As a follow-up, a working procedure was established, setting up the stages of cooperation (from the moment when the patient is calling the Helpline, to referral to an expertise centre for diagnostic, testing and treatment). Following a mapping exercise, the booklet „Map of services available to patients with rare diseases in Romania” was developed.
Summary of bilateral results
The access to information about diagnosis and management is essential and support groups of patients who went through similar experiences may lead to a better acceptance of the situation and a more efficient approach of the disease. No matter how strong and motivated parents may be, they cannot succeed by themselves to fight the disease. They need specialists and the understanding of the community they are part of. The most important objective of the promoter is to provide support and understanding, counselling and access to information, so that nobody feels alone anymore. Through the project implemented in partnership with Frambu Norway, the promoter consolidated the services provided through the NoRo Centre by developing the integrated care for patients with rare diseases in Romania and became more professional in providing socio-medical and educational services for rare diseases. The promoter is accredited for providing medical and social services, training courses and carry out research in the medical field. Several projects were implemented in partnership with Frambu – National Resource Center for Rare Disorders in Norway and they continue to fight together for a better life for patients with rare diseases in Romania and Europe. Within the project, a mentoring programme was implemented and helped the promoter to reorganize and improve activities. The promoter and partner also continued to be active together at European and international level. A school for journalists was organized within the project, with 15 journalists attending, and Frambu considers implementing this type of activity in a future mentoring programme together with NoRo Center. An interview with Lisen Julie Mohr about the collaboration between Frambu and NoRo can be found here:
http://www.apwromania.ro/node/429