Mission
To be a reference point – to hearken and debate – for all people affected with CES.
To be an international reference point able to link all CES cases in the world and create a database with phenotipic characters more adherent to the reality of the disease in contrast with the catastrophic clinical records available in the medical literature.
To encourage the medical scientific research with the aim of identify the causes and consequentely the specific treatments for the most recurrent characters of the syndrome.
To be a point of reference and debate able to link any medical, surgerical, rehabilitative organization in charge to deal with people affected by CES
To give any kind of support needed – moral, legal, economical – to CES families in order to help them to face the difficulties related with the syndrome.
To fundraise in order to spread a worldwide awareness of the syndrome, acknowledging about its existence.
To fundraise in order to create a Fundation in support of people affected by the syndrome and their families to face medical, travel and full board expenses, logistic and bureaucratic organization or any other aspect related with the syndrome.
To give legal and moral support to CES people and their families during the period of hospitalization in order to recognize and have regard for the unique complexity of the medical assistance needed by these specific patients.
To encourage and organize in the different continents , periodical scientific meetings about the most recurrent issues of CES.
To encourage the medical scientific research with the aim of identify the triggering reason of this specific cromosomic disorder.
To encourage and organized, in the different continents, periodic meeting among families and CES affected people.
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