{"id":3566,"date":"2024-02-12T12:20:36","date_gmt":"2024-02-12T11:20:36","guid":{"rendered":"http:\/\/www.cutislaxa.org\/patients-worldwide\/"},"modified":"2026-03-19T17:39:22","modified_gmt":"2026-03-19T16:39:22","slug":"patients-worldwide","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/fr\/patients-worldwide\/","title":{"rendered":"Cutis Laxa dans la monde"},"content":{"rendered":"
\n
<\/div>

Les Patients<\/b><\/h1>
<\/div><\/div><\/div>
\n

En France,\u00a0 le \u00ab\u00a0Handicap Peau\u00a0\u00bb n’est pas vraiment reconnu. Les \u00e9valuateurs des dossiers d\u00e9pos\u00e9s \u00e0 la Maison D\u00e9partementale des Personnes Handicap\u00e9es manquent d’\u00e9l\u00e9ments pour comprendre l’impact, le retentissement au quotidien, d’une maladie de la peau.<\/p>\n

C’est pourquoi avec la F\u00e9d\u00e9ration Fran\u00e7aise de la Peau\u00a0<\/a> nous avons particip\u00e9 \u00e0 la cr\u00e9ation d’un guide du Handicap Peau<\/a>, d’un Guide Pour les Patients<\/a> pour les aider \u00e0 remplir leurs dossiers, ainsi qu’un Formulaire Compl\u00e9mentaire<\/a> \u00e0 joindre au Certificat M\u00e9dical. Vous pouvez t\u00e9l\u00e9charger ces documents pour vous aider \u00e0 faire valoir vos droits<\/strong><\/p>\n

Quand on est concern\u00e9 par une maladie g\u00e9n\u00e9tique rare, rester enferm\u00e9 dans ses fronti\u00e8res natales peut \u00eatre synonyme d\u2019absence de prise en compte par la recherche scientifique, et de grande solitude car m\u00eame si notre code g\u00e9n\u00e9tique personnel est unique, la Carte du G\u00e9nome Humain est universelle.<\/p>\n

L’histoire de notre association<\/a> en est l\u2019exemple.<\/p>\n

Avoir \u00e9tabli des liens avec des malades et leurs familles aux quatre coins du globe a permis que la solitude de chacun soit rompue, mais aussi et surtout a fait prendre conscience aux m\u00e9decins et aux chercheurs qu\u2019une recherche \u00e9tait possible puisque nous \u00e9tions suffisamment nombreux.<\/p>\n

Tous les continents sont repr\u00e9sent\u00e9s au sein de notre Association\u00a0: L\u2019Europe, L\u2019Am\u00e9rique, l\u2019Oc\u00e9anie, L\u2019Asie et l\u2019Afrique.<\/p>\n<\/div><\/section><\/p><\/div>

<\/div>\n\n<\/div><\/div><\/main><\/div><\/div>
<\/div>
\n

Nous connaissons aujourd’hui<\/span><\/h2>\n<\/div><\/section>\n
582<\/span><\/strong>
<\/div><\/div>\n
<\/span><\/span><\/div>\n

malades\u00a0dans le monde<\/span><\/h2>\n

(Association’s census)<\/em><\/span><\/p>\n<\/div><\/section>\n\n<\/div><\/div><\/div><\/div><\/div><\/div>

\n
1<\/div>
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2<\/div>
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3<\/div>
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4<\/div>
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5<\/div>
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6<\/div>
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7<\/div>
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8<\/div>
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1
<\/div><\/div>

Am\u00e9rique du Nord
\n<\/strong><\/h3>\n

CANADA<\/strong> : 20 patients
\nMEXIQUE : <\/strong>10 patients
\nUSA :\u00a0<\/strong> 199 patients<\/p>\n<\/div><\/div>

2
<\/div><\/div>

Am\u00e9rique du Sud<\/h3>\n

ARGENTINE : <\/strong>8 patients
\nBAHAMAS :\u00a0<\/strong> 1 patient
\nBRESIL :\u00a0<\/strong> 22 patients
\nCHILI :\u00a0<\/strong> 1 patient
\nCOLOMBIE :\u00a0<\/strong> 7 patients
\nCOSTA RICA :\u00a0<\/strong> 1 patient
\nCUBA :\u00a0<\/strong> 1 patient
\nEQUATEUR :\u00a0<\/strong> 1 patient
\nPANAMA :\u00a0<\/strong> 4 patients
\nPEROU<\/strong> : 1 patient
\nPORTO RICO :\u00a0<\/strong> 1 patient
\nREPUBLIQUE DOMINICAINE :<\/strong> 1 patient
\nVENEZUELA<\/strong> :\u00a0 3 patients<\/p>\n<\/div><\/div>

3
<\/div><\/div>

Europe<\/h3>\n

ALLEMAGNE :\u00a0<\/strong>15 Patients
\nBELGIQUE : <\/strong>5 Patients
\nCROATIE:\u00a0<\/strong>1 Patient
\nDANEMARK : <\/strong>3 Patients
\nESPAGNE :\u00a0<\/strong> 17 Patients
\nESTONIE :<\/strong> 1 Patient
\nFINLANDE :\u00a0<\/strong>3 Patients
\nFRANCE : <\/strong>68 Patients
\nGRANDE BRETAGNE :\u00a0<\/strong> 33 Patients
\nGR\u00c8CE :\u00a0<\/strong> 3 Patients
\nHONGRIE\u00a0 : \u00a0<\/strong>1 Patient
\nIRLANDE : <\/strong>3 Patients<\/strong>
\nITALIE :<\/strong> 10 Patients
\nNORV\u00c8GE :\u00a0<\/strong> 2 Patients
\nPAYS BAS<\/strong> :\u00a0<\/strong>18 Patients
\nPOLOGNE : <\/strong>6 Patients
\nPORTUGAL :\u00a0<\/strong> 1 Patient
\nROUMANIE<\/strong> : 2 Patients
\nSLOVAQUIE<\/strong> : 1 Patient
\nSU\u00c8DE<\/strong> : 4 Patients
\nSUISSE<\/strong> : 3 Patients<\/p>\n<\/div><\/div>

4
<\/div><\/div>

Afrique<\/h3>\n

AFRIQUE DU SUD : <\/strong>1 Patient
\nALG\u00c9RIE<\/strong> : 2 Patients
\n\u00c9GYPTE<\/strong> : 5 Patients
\nMAROC<\/strong> : 3 Patients
\nNIGERIA :<\/strong> 1 Patient
\nSENEGAL<\/strong> : 1 Patient
\nSIERRA LEONE :<\/strong> 1 Patient
\nTANZANIE<\/strong> : 1 Patient
\nTUNISIE <\/strong>: 1 Patient<\/p>\n<\/div><\/div>

5
<\/div><\/div>

Moyen Orient<\/h3>\n

ARABIE SAOUDITE<\/strong> : 2 Patients
\nDUBAI<\/strong> : 2 Patients
\nIRAK :<\/strong> 3 Patients
\nIRAN :<\/strong> 1 patient
\nISRAEL : <\/strong>3 Patients
\nJORDANIE : <\/strong>3 Patients
\nKOWEIT :<\/strong> 1 Patient
\nLIBAN<\/strong> : 6 Patients
\nPALESTINE<\/strong> :\u00a0 1 Patient
\nSYRIE :<\/strong> 2 Patients
\nTURQUIE<\/strong> :\u00a0 13 Patients
\nYEMEN<\/strong> :\u00a0 3 Patient<\/p>\n<\/div><\/div>

6
<\/div><\/div>

Asie<\/h3>\n

BANGLADESH<\/strong> : 2 Patient
\nCHINE<\/strong> : 2 Patients
\nCOR\u00c9E<\/strong> : 3 Patients
\nINDE<\/strong> : 7 Patients
\nJAPON<\/strong> : 2 Patients
\nMONGOLIE<\/strong> : 1 Patient
\nPHILIPPINES<\/strong> : 1 Patient
\nSRI LANKA<\/strong> : 2 Patients<\/p>\n<\/div><\/div>

7
<\/div><\/div>

Oc\u00e9anie<\/h3>\n

AUSTRALIE<\/strong> : 20 Patients
\nNOUVELLE Z\u00c9LANDE<\/strong>: 2 Patients<\/p>\n<\/div><\/div>

8
<\/div><\/div>

Russia<\/h3>\n

3 Patients<\/p>\n<\/div><\/div><\/div>\n

Mise \u00e0 jour : 27 Juin 2023<\/p>\n<\/div><\/section>\n<\/div><\/div><\/div><\/div><\/div>

\n
<\/div>

Les diff\u00e9rents documents disponibles concernant la Cutis Laxa font \u00e9tat d\u2019une centaine de cas<\/strong> d\u00e9crits dans la litt\u00e9rature m\u00e9dicale, sans compter ceux qui ne sont pas, ou tardivement, diagnostiqu\u00e9s. Nous savons aujourd’hui qu’il y a bien plus d’une centaine de cas. Aux 4 coins du monde il y a toujours des malades qui sont seuls.<\/p>\n

Doivent-ils le rester ?<\/p>\n

Si, au hasard de vos voyages, de vos rencontres, vous avez connaissance d\u2019une personne atteinte de la Cutis Laxa, donnez-lui nos coordonn\u00e9es. C\u2019est important pour elle, c\u2019est important pour nous, c\u2019est important pour la recherche, c\u2019est important pour vous.<\/strong><\/p>\n<\/div><\/section><\/div>

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