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Génération 22Lyon, France
Generation 22 is an association under the 1901 law that supports people affected by deletion 22q11.2 and their families. Deletion 22q11.2 is a rare genetic disease that affects one in 2000 births. It corresponds to the loss of a piece of DNA on one of the two chromosomes 22. It leads to developmental abnormalities that vary with age, number, and intensity. The most common symptoms are heart disease, palatal malformations, immune deficiency, learning disorders, behavioral disorders, and mental disorders.
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Generation 22 is a member of the Rare Disease Alliance. Generation 22 develops communication tools to inform families and raise awareness of this complex syndrome among health professionals. All committee members are volunteers and no grants are received. Thanks to memberships and donations, Generation 22 organizes actions to inform families: family meetings, discussion groups, national congresses every two years; participates in European congresses but also actions towards young people such as a job search assistance internship.