The Italian Alliance of Rare Disease patients'Associations was founded with the goal of improving the quality of life of RD people , through the activation, the promotion and protection of their fundamental rights in the fields of research, bioethics, and health and in social- health policies
About UNIAMO
Uniamo was founded in 1999 in Rome, promoted by a small group of associations. Today, Uniamo gathers more than 95 member organizations, covering more than 600 different diseases. Uniamo is also member of the European Alliances for rare disease, EURORDIS.
UNIAMO Activity and Projects
Within the general framework of EURORDIS activity, UNIAMO FIMR has been carrying out many projects, some of which in collaboration with EURORDIS . Most of the projects are funded by the Ministry of Labour and Social Affair and developed in collaboration with other relevant stakeholders in the field of Rare Diseases at national level such as Scientific Societies, Telethon and FARMINDUSTRIA ( Drug Industry Association) and ORPHANET. These projects are aiming at empowering RD patients and RD Associations’ representatives by providing them with knowledge and tools while the organization of public events is useful to arise awareness on RD in the public society. Since 2008 UNIAMO FIMR has been the coordinator of the RDD events throughout Italy. With the support of FARMINDUSTRIA a cartoon on RD was created and every year it is aired on national TV networks during the week prior to the RDD. A wide media coverage is ensured as well as the distribution of information leaflets provided by all Patient Associations involved . The commitment to promote the creation of national and international network of organizations of RD patients with sharing and dissemination of information has been addressed with the development of “Insieme Project”, days of socialization for RD patients and “Pollicino Project” database to support people with a rare disease, their families and their physicians (www.malatirari.it). The promotion of the Directory of Rare Diseases 2005, and the coordination of the guide Rare Diseases Associations in Italy 2008 -2009 promoted by Orphanet Italy and in collaboration with Farmindustria - The action of UNIAMO FIMR to advocate and develop health policies to protect RD patients develops in proposing and supporting legislation, related to rare diseases and orphan drugs also promoting the correct and timely implementation at national level of the European Regulation on Orphan Drugs. In promoting the legislative training of RD patients' representatives and help them identify their institutional partners at the local level by providing them with the knowledge in order to be an influential partner in planning social- health and public health policy on rare diseases.“Dado Magico Project”, legislative training events for RD Patients’ representatives in the social, health and social-health areas.• MOMO Project, the empowerment that makes a difference, aimed at the progressive regionalization of the Federation to allow each region to bring together in one voice the demands of different groups of patients with rare diseases. Educational process organized in 2010 with three workshops. Last but not least the organization of the Italian Conference of the EUROPLAN Project . For the first time all stakeholders, including patients, worked together on the evaluation of the transferability of the Council Recommendation. The need of a National Plan/Strategy and National Committee outlining the strategies to be implemented, was assessed. The lack of specific knowledge on rare diseases by health professionals is a major difficulty in the management of the RD patients. Aiming at improving an easier access to information, diagnosis, treatment and care UNIAMO has created, in collaboration with the medical societies, pediatricians,GPs and geneticists: Fantàsia Project”, seminars on the topics of clinical suspicion, diagnosis and of the path from diagnosis to therapy • Conoscere per assistere a three-year project aimed at training on rare diseases but also at the management of the transition from pediatric age to adult age care.• Mercurio Project, whose aim is to implement and enhance the site www.Malatirari.it; during 2011, . A virtual place where patients, family members and health personnel involved in the diagnosis and treatment of these diseases may share information based on direct experience - There is the growing need to identify research priorities as they emerge from listening to patients' needs in order to guide and promote the development of treatment and research. “Il Codice di Atlantide project, developed in collaboration with TELETHON Italy will promote the culture of RD research among the RD Patients’associations