“UNIAMOci e clicchiamo,” (“Let’s Get Together and Click!”) - initiative financed by the Welfare Ministry, Health Ministry and the Social Policies Ministry (formerly Social Solidarity Ministry) - directive 2007 - for a modern, structured and functional internet site for the UNIAMO Association, keeping active, developing and expanding the data base on rare diseases represented by the federation. Electronic Newsletter.
1999-2009: Ten years of the federative association for rare diseases - event celebrating the ten years of the Federation UNIAMO FIRM onlus took place in Venice on San Servolo Island July 2-5 2009.
With the presence of MP F. Martini, an agreement was signed between the field’s scientific companies and general practitioners, pediatricians and Farmaindustria for the training of health workers concerning rare diseases.
A special session was arranged dedicated to the regional articulation of the tiered training seminar: “Know-how to Assist,” (San Servolo Dossier 2-5 July 2009 attachment).
Organization of a Master ECM for the training of general practitioners and pediatricians regarding the problem of rare diseases, in collaboration with the scientific Firms SIP and SIMG, with the FIMP and FIMG federations and with FARMINDUSTRIA.
The course took place on February 26-28 2009.
Organization of World Rare Disease Day - February 28th 2009
A public health priority, "The Patient at the Health Service Centre" promoted by EURODIS.
It was carried out in Italy thanks to UNIAMO FIRM onlus and the associations of people with rare diseases, whether or not members of UNIAMO FIRM onlus.
Projects and initiatives financed by the Ministry of Social Solidarity, directive 2006 for law 383/2000:
"Fantasia" - in two seminars, some of the most eminent personalities from the Italian and foreign Academic world, with proven competence and consolidated experience in the field of rare diseases, were invited to participate and express their opinions.
The fundamental themes dealt with in these two seminars included specifically: "From Clinical Hypothesis to Diagnostic Verification" and "From Diagnosis to Therapy".
"Dado Magico" (“Magic Dice”) - Four events of health and social legislative training in four different regions for people belonging to associations, whether member-organizations of Uniamo or not, dealing with rare diseases in order to create the branch offices of Uniamo and lend support towards being present for consultation and proposal with the regional governments of Sardinia, Calabria, Lazio, and the self-governing Province of Trent.
Coordination for making a guide "Italian Rare Diseases Associations " - 2008/2009 promoted by ORPHANET ITALIA,
compiled by UNIAMO FIRM onlus in collaboration with FARMINDUSTRIA, published by ELSEVIER which collects
information about 179 Italian associations concerning rare diseases. For its presentation on October 8th 2008,
a Press Conference took place in the Chamber of Deputies in Rome with the participation of the Undersecretaries of the
Health Ministry, Dr. FRANCESCA MARTINI and Dr. EUGENIA ROCELLA.
Organization of the first European Day of Rare Disease on February 29th 2008, "A rare day for the very special people" -
"A public health priority," promoted by EURORDIS.
2008 UNIAMO celebrated the event with a national press campaign, offering its own set of souvenirs, and with an exclusive concert by Gino Paoli at the Conciliazione Auditorium in Rome.
The Feb.28th concert and the Uniamo press campaign were made possible thanks to the collaboration of FARMAINDUSTRIA.
An ECM course for general practitioners, pediatricians, as well as paramedical and pharmaceutical staff.
Re-edition of electronic Newsletter.
Re-edition of the book "Rare Disease Associations" promoted by Orphanet Italia.
Projects financed by the Social Solidarity Ministry - announcement 2005 for law 383/2000:
"Pollicino" (“Little Thumb”) - Creation of a data base in order to really support patients affected by rare diseases, their relatives and general practitioners.
"Insieme" (“Together”) - Organization of Socialization Days for the rare disease patients, with the purpose of providing information about rare diseases and also to create the chance for patients, families and associations to meet and compare their issues with others having the same problem in the country.
Partner of the financed project by European Union:
"CAPOIRA" – (“Capacity-building for Patient Organizations to Participate in Research Activities") which has as a coordinator the European Federation of Consumer Associations "Eurodis" and as a partner three European alliances: UNIAMO FIRM for Italy, FEDER for Spain, and Rare Disorders for Denmark.
The objective of the project is to develop a training model which helps consumer associations understand relevant
clinical research files.
Uniamo is the collaborator and final examiner of the project: "EuOrphan, Service for the Support of the European Orphan
medicine market," co-financed by the European Commission.
Uniamo is the collaborator and final examiner of the project "Eurogentest," definition of the quality standard for
the genetic tests, co-financed by the European Commission.
"Rapsody" international project of solidarity, promoted by "Eurodis" focusing on the creation and development of European level network services for patients affected by rare diseases.
The first workshop for Italy took place in Rome, at the Superior Health Institute, on March 24th 2007.
Promotion of the law 1426 "Measures to protect the rights of citizens affected by rare diseases and to support research in this field, presented to the Senate on March 21st 2007
"Symposium on Rare Diseases and Orphan Drugs" training course on Rare Diseases with ECM for general practitioners
and nurses, took place in Pavia at the University on June 9th 2006. Started the project "Uniamo for the consumers
associations" in order to develop services in favour of both federated or non-federated associations, encouraging
open discussion and giving them instructions and customized services, organizing a training course focusing on such important themes as "Privacy," "How to Define a File" and "Taking Charge of Patients."
Participating in the presentation of the five-year project "Teddy" (Task-force in Europe for Drug Development for The Young).
Pediatric medicines and the clinical problems of children are the basic themes of Teddy, financed by European Economic Community, which strives for a correct program of pharmacological testing for children and suggests the
most suitable paths for scientific research capable of producing the most reliable pediatric medicines— July 11th, Rome.
Co-organization of the 11th National SIGU Congress – an Italian human genetics company, 8 - 11 November 2006,
in Lido of Venice. During the congress, a section addressing consumer associations was entitled: "The Promises of Research Come True for the Patient: the future of "European Regulation for Advanced Treatments (2003/2006)"
In March 2005, the first version of the website www.uniamo.org was created thanks to Sigma-Tau.
In April 2005, in Italy it carried out the "Building a Community" day in collaboration with Eurodis.
From April to July 2005, an awareness campaign took place regarding rare diseases, as well as fund raising, promoted by the Cesare Serono Foundation (Brioni Golf Cup and 17th Italian national Sailing Race).
7 Roundtables were organized in different regions of Italy with the representatives of the interregional panel for rare diseases (Friuli, Sicily, Apulia, Campania, Lazio, and Tuscany)
In July 2005, it urged Question Time in Parliament about the disparity in patients' treatment in different regions
and did actions at the regional level obtaining their distribution for C category in Lombardy, Tuscany, Marche, Abruzzi, Lazio, and Campania regions, and receiving reimbursement for transportation outside of Sardinia to go to a centro di Eccellenza.
Since August 2005, it has collaborated on the EuroGentest project, financed by European Commission.
23th National Sailing Regata: combined with organizing of roundtables among the associations creating regional coordination, visibility, awareness, information, and fund-raising Symposium "Rare Diseases" in Rende (Cosenza), 13 - 25 October 2005 -Popularization, training and information about rare diseases. Organized: "The Game of Rarity," a training course with ECM, for general practitioners, nurses and pharmacists, and a meeting about "The State of Art about Rare Diseases" in Calabria: how the region accepted regulation 279/01.
It has worked very intensely in collaboration with two federate associations Unitask and Associazione Sclerosi Tuberosa (Tuberose Sclerosis Association), to host the second training course for general practitioners, nurses and pharmacists of the region of Calabria and "Legislative Performance in Favour of Rare Diseases" (comparing the situation in various regions.)
In addition, it organized a football match and a theater performance to encourage awareness and promote fund-raising for Uniamo activity.
An external employee was hired with a limited contract for extra office support.
In 2004 it was a partner in drafting "The Rare Disease Book— Associations in Italy," produced by OrphanetItalia and published by Farmindustria.
Since 2004 it has been a Partner of the EuOrphan project "Service for the Support of the European Orphan Medicine
Market" (Information service and distribution of orphan drugs sold in European and non-European states) financed by European Commission.
In May and June 2004, it did an awareness campaign and collected funds with CirFood (a leading food company in Italy) together with Correspondents for TV Journalist Solidarity.
Since 2004 preliminary contacts were made with FISD (now CIP, the Italian Paraolympic Committee) and ANFFAS for a future projects together.
Since October 2004 UNIAMO has been represented in the Regional Committee of Lazio for Rare Diseases.
In October 2004, it organized the first training course on rare diseases for general practitioners, pediatricians and organizations together with the Centro Regionale del veneto and the State-Region Conference "Legislative Fulfillment: Comparing Regional Reality," gathering the institutional representatives of the Interregional Panel on rare diseases.
In 2004 and 2005 it promoted the budget amendments "Measures in favour of patients affected by rare diseases"
and "Integration of the Fund instituted by DL 269" (national Budget 2004 and 2005).
From 2000 to 2003 UNIAMO cooperated with the European Action Program (PARD 1999/2003), funded by the European Commission, to re-classify rare diseases. National rare disease organizations from each Europea country-member of the European Federation EURODIS participated in that program.
Here below is the list of the treated subjects:
1999/2001 PARD 1 : " The Orphan Drugs Available for Patients Affected by Rare Diseases"
2001/2002 PARD 2 : " European Portal on Rare Diseases "
2202/2003 PARD 3 : " International Network " – Pan European Network Guidelines for Orphan Drugs
In May 2002 Uniamo promoted bill 1388 "Research Incentives and Treatment Access for Rare Diseases.” Enforcement of article 9 of EC regulation n. 141/2000 of December 16, 1999 which:
1. Encourages the research and development of new medicines.
2. Guarantees the availability of treatment and immediate access to new medicines.
3. Controls health service decentralization and the role of regions regarding rare diseases.
From 2002 to 2004 it was a member of Ministerial Commission concerning D.M. 06.06.02
In September 2002 it carried out the first National Awareness Day for "Rare Diseases and Orphan Drugs " with the participation of all interested individuals, and institutions.
In October 2002 it teamed up with EPPOSI - European Platform for Patients' Organizations, Science and Industry, to organize the third workshop of "Therapy Development and Partnering."
In 2003 it was a partner in the European Symposium "The Role of Patient Support Groups for Rare Diseases," headed by the Mario Negri Institute (European Days of debate about rare diseases and orphan drugs) funded by the European Commission.
In September 2003 it organized the press conference at the Rome Senate for "2003 Disability Year: Today We Talk about Rare Diseases."
In December 2003, thanks to the Minister of Health Prof. Girolamo Sirchia, it was decided a partnership with "Events for Solidarity" - National TV Football Journalists - in order to popularize the problems of rare diseases. The initiative was appropriately advertised with a press conference.
The Italian Federation of Rare Diseases UNIAMO FIMR onlus was founded by a group of rare disease associations.
The legal headquarters is in Rome and the operative headquarters is in Venice.