The motion to establish the 'Regional Day dedicated to Rare Siblings', the sisters and brothers of people who have a rare disease, was unanimously approved by the Lazio Regional Council.
"The objective is to have a moment of awareness on this issue. Because when in a family there is a situation of people, in particular boys and girls with rare diseases, in addition to generating pain, uncertainty about the future and anxiety, these difficulties often fall precisely on the brothers and sisters. Even though they are the people most involved and invested with the emotional and concrete load, they are often left alone with their needs and requirements. Rare brothers and sisters deal with the inevitable feeling from an early age of being the ones least in need of attention and at the same time they feel the responsibility of present but above all future care when the parents will no longer be there. This is why I presented this motion to establish the Regional Day dedicated to Rare Siblings on 31 May in conjunction with the European day. An application brought forward by parents, and associations and in particular the Rare Diseases Observatory (Omar), which I joined to reach this important goal together.
I thank Claudia Finelli, municipal councilor of Azione, for having taken on this important battle with her sensitivity", said the councilor of the Lazio Region of Azione, Alessio D'Amato.
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