Home » Rare diseases: diagnosis, symptoms, treatments, who to contact. Patients’ needs (and the unimplemented law)

Rare diseases: diagnosis, symptoms, treatments, who to contact. Patients’ needs (and the unimplemented law)

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Rare diseases: diagnosis, symptoms, treatments, who to contact.  Patients’ needs (and the unimplemented law)

Imagine having a rare disease from which a thousand or even a dozen people in the world suffer, and being told that there are no therapies to cure it or that they are not effective; or of being one of the hundred thousand Italians who don’t even know what disease they suffer from; or having a child who periodically has to be admitted to a hospital far from home, or having to wander, for years, from one hospital to another in the hope of a possible cure, or searching for the same name as the disease, unknown even to doctors .

It is the condition of loneliness, as well as suffering, that rare disease patients have in common. Hence the invitation from the community of people with rare diseases not to forget about them and their needs, renewed on the occasion of World Day – which also occurs on a rare day, 29 February – this year under the banner of slogan «Share your colours».

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