Malattie rare,  al via campagna 'UNIAMOleforze’ con 60 eventi e focus su ricerca - video Dailymotion

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(Adnkronos) - In Italia le persone con malattia rara sono più di 2 milioni per le circa 8mila patologie oggi conosciute. Solo per il 5% di queste malattie, però, esiste una cura. Fondamentale per il futuro di questi pazioenti è la ricerca. E nell'ambito del 'viaggio' intrapreso tre anni fa, dopo la diagnosi precoce e la presa in carico, proprio quello della ricerca è il tema scelto da Uniamo (Federazione italiana malattie rare ) per la campagna di sensibilizzazione #UNIAMOleforze. Per tutto il mese di febbraio moltissimi interlocutori realizzeranno una serie di iniziative (più di 60 gli eventi in calendario) accomunati dal claim 'Molto più di quanto immagini', che condurranno al 28 del mese, la Giornata delle malattie rare. Questa mattina nella sede del ministero della Salute si è svolto l'evento inaugurale a cui hanno partecipato i rappresentanti dei principali attori in gioco nel campo della ricerca: ministero della Salute, ministero dell'Università e della Ricerca, Istituto superiore di sanità, Agenzia italiana del farmaco, Consiglio nazionale delle ricerche, Fondazione Telethon.

Transcript

00:00More than 2 million people in Italy are affected by rare disease.

00:08For about 8,000 known pathologies, but only for 5% of them, there is a cure.

00:13Thanks to the progress of scientific research, however, numbers and lives can also change radically.

00:18Research after early diagnosis, taking charge, is the third theme chosen by UNIAMO,

00:23the Italian Federation of Rare Diseases, for the awareness campaign UNIAMO le Forze.

00:27For the whole month of February, in fact, many stakeholders will carry out over 60 events,

00:32accumulated by the CLAIM, much more than the images that will lead to the 28th of the month,

00:36the Day of Rare Diseases.

00:38This was discussed during the inaugural event at the Ministry of Health,

00:42to which the representatives of the main actors involved in the field of research on rare diseases have participated.

00:47Research is fundamental for the future of people with rare diseases,

00:51but we must not only think about research that leads to pharmacological treatments.

00:56There is behavioral research, research on the natural history of the patient,

01:00research also on organizations that improve the ways of taking charge.

01:04It is also important to build a network on research, so that no initiative is wasted.

01:11Research on rare diseases in recent years has never stopped, thus deepening further important aspects.

01:17Not only research based on the definition of pathogenic mechanisms of rare diseases

01:24and the development of drugs, but also research on the organization of health systems,

01:30on the care of people with rare diseases,

01:34especially those who have more difficulty accessing the health system and are therefore more disadvantaged.

01:45All this research is carried out in a multistakeholder environment,

01:50with the involvement of all the actors involved,

01:53first of all the patients who are then destined for the outcomes of the research.

01:59Fundamental in the management of rare diseases is the early commissioning,

02:03as the rapidity of diagnosis of certain pathologies allows to cure them more effectively.

02:08Their fundamental role is carried out by the free choice pediatrics,

02:11which are the doctors who see first the children,

02:14so they have the possibility to diagnose and identify certain symptoms

02:18that can lead to diseases,

02:20and then get involved in the network that the CONEMAR, the national committee,

02:25has contributed to and is contributing to design at the national level,

02:30precisely to make clear and clear pathways of care.

Malattie rare, al via campagna 'UNIAMOleforze’ con 60 eventi e focus su ricerca

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