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pursuant to Rule 133 of the Rules of Procedure

on rare diseases

Gianluca Buonanno

Motion for a European Parliament resolution on rare diseases  

The European Parliament,

–       having regard to Rule 133 of its Rules of Procedure,

A.     whereas on Thursday 23 July the 'First report on the condition of people suffering from rare diseases in Italy', drawn up by UNIAMO (Italian rare disease federation) was presented to the Chamber of Deputies; whereas the report revealed that between 450 000 and 670 000 Italians suffer from such diseases;

B.     whereas the report also revealed that, regrettably, most of the costs of the care provided to a person suffering from a rare disease are still borne by families;

C.     whereas, in spite of efforts made in recent years, both by Member States and the EU, much remains to be done to alleviate the burden on patients and their loved ones;

1.      Calls on the Commission, given its expertise in public health, medicine and social policy, to put in place the necessary and urgent financial support measures for people living with a rare disease and their families;

2.      Instructs its President to forward this motion for a resolution to the Commission.

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