5th Cutis Laxa Days – Annecy (France) 2016
16 patients attending, aged 6 to 66, coming from 7 different countries

CUTIS LAXA INTERNATIONALE aims are to :

    Break Cutis Laxa patients’ isolation and loneliness, whatever their country is ;
    Work to help research.

CUTIS LAXA INTERNATIONALE wants to :

    Allow patients not to be isolated, social outcasts, anymore ;
    Allow them not to be left aside by research, helping their census to be made and informing them about progresses on Cutis Laxa research as well as all scientific findings that could have an impact on Cutis Laxa
    Get this rare disorder known and recognised, and gather all data about it
    Improve patients’ healthcare and quality of life, whatever their disorder is
    Take part in developing Society towards a better recognition and care, at all level, for patients in general and for Rare Disorders issues in particular.

CUTIS LAXA INTERNATIONALE is :

    The only organisation, worldwide, dedicated to Cutis Laxa.

WE TAKE PART IN ERN-Skin, AND ARE ACTIVE IN IT because :

    Unity is strength, especially for people suffering from rare disorders
    Creating, throughout Europe, an experts network will allow patients, whatever their country is, to have a better access to diagnosis, a better healthcare and thus a better quality of life
    Patients will have access to information concerning their disorder
    Patients will be able to get their needs knwon thanks to patients representatives ;
    Today it is very difficult, even impossible, to give an answer to European patients asking us who is the expert for Cutis Laxa in their country. ERN-Skin will allow us to answer their questions in the future ;
    Sharing data is essential for research to progress and give patients hope for treatment.
    In 2017, no one can remain isolated, whether the patient facing his disorder or the researcher facing his bench ;

THANKS TO THE ERNs, RARE DISORDERS will :

    Be better known and recognized, medically and socially, in all European countries ;
    Have a better medical and social care, in all European countries ;
    Be better considered by research projects ;
    Be better treated because better listed ;
    Be better diagnosed ;
    Be better considered in a multidisciplinary management.
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