Forum of rare diseases of Piemonte and Valle D’Aosta

A-RARE-blog

A-RARE, the forum of rare diseases’ associations of Piemonte and Valle D’Aosta has been officially introduced during the Conference organized by the CMID at the San Giovanni Bosco Hospital in Turin on the occasion of Rare Diseases Day (February 28, 2017).

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An interesting project made to create a network among the different associations of patients (and their families) suffering from rare diseases to make their voice heard by those who have the institutional duty to protect their rights.

Twenty-eight associations, including ours, have drawn up a program document that contains  the mission and goals of the project, together with an initial list of needs expressed by the associations which are going to be discussed and presented to the competent institutions.

We have a very long way to go, but the team spirit which drives every meeting among the founders’ associations give us hope.

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