“The Ministry of Health pays constant attention to the over two million rare disease patients in Italy. A few days ago the National Rare Disease Committee, of which Uniamo is a part, took office and has been waiting for some time to be made operational; this certainly constitutes a significant step forward in the implementation of the Consolidated Act on rare diseases.The next steps are the definitive adoption of the National Plan for rare diseases and of the Network Reorganization document.The documents are ready and are on the agenda of the National Committee who is called to express his opinion”. This was stated by the Minister of Health, Orazio Schillaci, on the occasion of the opening event of the campaign #let’s join forces which will accompany the events of the XVI edition Rare disease day. “It is important – continued the Minister – to make every effort to cure rare diseases and to support research and the production of orphan drugs. Investments in scientific research need to be increased because it represents the strategic axis on which to aim to provide to children and adults affected by rare diseases, certain, rapid diagnoses and effective therapies”.
The Minister also recalled Italy’s commitment at the European level. “The Ministry of Health has joined the Call to action proposed by the Czech Presidency for the creation of a new EU regulatory framework on rare diseases, a proposal appreciated by the most representative patient associations at European level. And then the supervision of the Ministry which is proceeding with the creation of the Joint Action on rare diseases funded by the European Commission for the integration, within individual member states, between the excellence of the European reference networks (ERN) and the national reference structures”
The event, moderated by the General Director of Communication and European and International Relations of the Ministry of Health, Sergio Iavicoli, was attended by the President of the Istituto Superiore di Sanità, Silvio Brusaferro, some members of the National Committee for Rare Diseases, representatives of patients and the Undersecretary for Health, Marcello Gemmato, who closed the works.
During the meeting, the commercial created by the Federation was presented in preview WE UNITE in collaboration with Luca Ward who will go on TV and radio channels for the campaign. The aim of the initiative is to make an ever wider public aware of the “patient journey”, the long journey that patients take when they face the disease.
In February, events will be organized in many Italian cities, including: breaking latest news, Florence, Rome, Naples, Genoa, Bari. The social campaign will involve influencers, people with rare diseases, associations and citizens.
The closing event will be held on February 28, Rare Disease Day 2023in the Senate of the Republic with the patronage of the Senate of the Italian Republic, AIFA, National Research Center, Agenas, FNOPI (National Federation of Nursing Professions), FNOPO (National Federation of Midwifery Professions), FNOMCeO (National Federation of Orders of Surgeons and Dentists), AOPI (Italian Pediatric Hospitals Association), Third Sector Forum, Italian Paralympic Committee, Orphanet, Terzjus, Telethon Foundation, Special Olympics Italy.
L’hashtag #let’s join forces wants to encourage all the players to join forces to optimize the system and achieve real management, which ensures early diagnosis, appropriate therapies, available and at home, structured pathways, social-health integration, links between specialized centers and the local area, research and trials that offer hope for the future.
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#rarediseaseday #uniamoleforze #rarimaisoli