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.
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