(Adnkronos) - “La ricerca è fondamentale per oltre 2 milioni di malati rari italiani, non a caso sarà il tema centrale della campagna #UNIAMOleforze per la Giornata delle Malattie rare, un 'viaggio' intrapreso tre anni fa. La ricerca è il nostro futuro ma è sbagliato associarla solo al farmaco. Quest'anno il calendario prevede oltre 60 eventi su tutto il territorio nazionale per focalizzare l'attenzione sulle malattie rare e di questo parleremo durante tutto il mese di febbraio attraverso una serie di iniziative con associazioni, università, scuole. Uniamo farà tappa a Torino, Udine, Pisa, Bologna, insomma ci saranno varie occasioni nelle quali sottolineeremo i temi che ci stanno a cuore". Lo ha detto la presidente di Uniamo, Annalisa Scopinaro, alla presentazione – al ministero della Salute - della campagna per la Giornata delle Malattie rare promossa dalla Federazione italiana malattie rare con l'adesione dei ministeri di Salute, Università e Ricerca, Iss, Aifa, Cnr e Fondazione Telethon.
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00:00Today, the Ministry is launching initiatives for the Day of Rare Diseases, which will cover the whole month of February.
00:11In addition to 62 initiatives organized by various entities, institutions, associations and even individual individuals,
00:18which will cover the month of initiatives and therefore attract attention to rare diseases.
00:23The Federation will be present in some topical events, in collaboration with the ERN, which have an Italian guide,
00:30this event at the Ministry, the final event with the MPs and Rare in Festa in Bologna on March 1st.
00:37The focus of this year is research, after going through with the tempestuous diagnosis and taking charge of the other two stages of the past few years.
00:46Research is fundamental for the future of people with rare diseases, but we must not think only of the research that leads to pharmacological treatments.
00:55There is behavioral research, research on the natural history of the patient, research also in organizations that improve the ways of taking charge.
01:03To date, we have only 5% of the rare pathologies, about 400, which have a pharmacological treatment.
01:11The others still have no hope. Researching on these pathologies is important, it is also important to network on research so that no initiative is wasted.
01:24We are accompanied in this path by the Ministry of Health, the Ministry of University and Research, the National Center for Rare Diseases,
01:31AIFA, the Institute of Health and Teleton has also joined us in this campaign.