The Italian Alliance between patient groups is founded with the goal of promoting policies in defence of and improving quality of life for all the persons affected by Rare Diseases.
About UNIAMO
Uniamo is a National Alliance joining organizations of patients suffering from rare diseases, with the aim of defending their rights and improving quality of life for all people involved.
Uniamo was founded in 1999 in Rome, promoted by a small group of associations. Today, Uniamo has more than 50 member organizations, covering more than 600 different diseases. Uniamo is also member of the European Alliances for rare disease, EURORDIS. EURORDIS is present in 10 states members of the European Union and, according to the latest estimates, represents about 20 million of rare disease patients.
Uniamo is the only Italian alliance representing a variety of rare diseases and the taking care of the needs of all involved people.
Our Mission
Promote action in favour of the rare disease movement.
Promote scientific research and information
Develop access to care
UNIAMO’s activities and programmes
International cooperation with Eurordis (European Organizations for Rare Disorders) to support action on Rare Diseases at European level.
International cooperation with Epposi (European Platform for Patients’ Organizations, Science and Industry).
Promotion of the approval, by Italian parliament, of law proposal (D.D.L.) no.1388 “Provisions in support of scientific research and access to therapy in the field of rare diseases”.
Enforcement of Article 9 of UE Regulation on Orphan Medicinal Products, no. 141/2000, dated 16/12/1999.
Promotion of an amendment of Italian Financial Law of 2004 regarding “Actions in favour of patients suffering from rare diseases”.
Organization of a National Event within the European Rare Diseases Awareness Week framework.
Promotional Partnership with “Gli inviati della Solidarietà”, soccer team formed by italian TV journalists.
Promotion of the book “Malattie rare – Associazioni in Italia” (Rare diseases – Italian Associations) issued by Orphanet –Italia, in cooperation with Farmindustria (Italian Pharmaceutical Industry Association).
Member of the Ministry of Health Commission for “Urgent actions on Rare Diseases”, years 2002-2003.
Implementation of campaigns to raise attention on the need of instituting a research fund dedicated to the development of orphan drugs.
Recent activities
- Projects funded by the Ministry of Welfare: “Pollicino” and “Insieme” (realized in 2007)
- Participation in CAPOIRA – Capacity-building for patient Organizations to partecipate in Research Activities” project, funded by the Eu Commission and organised by EURORDIS.
- Participation in “Rapsody Project” promoted by Eurordis.
- Support to the DDL 1426 “Misure per la tutela dei diritti dei cittadini affetti da Malattie Rare e di sostegno della ricerca in tale ambito” presented to the Italian Senate on 21.03.07
- Coordination for the book “Associazioni Italiane Malattie Rare” - 2008/2009, promoted by Orphanet Italia, with the support of Farmindustria.
- National organization of the 1° Rare Disease Day, february 29th 2008 “A rare day for very special people”
- Projects funded by the Ministry of Welfare: “Dado Magico” and “Fantàsia” (realized in 2008)
- National organization of the 2° Rare Disease Day, February 28th 2009 “Patient Care: a Public Affair”