Ensemble pour Manon et les Malades du Syndrome Ehlers Danlos

Purpose of the association

This is a national charity that supports people with Ehlers-Danlos syndrome and their families; it aims to break down isolation, bring together patients, healthcare professionals and carers, and educational teams to work together to overcome feelings of exclusion; to come to terms with the syndrome; to learn more about it so that they can take an active role in managing it; to support the acceptance, in the broadest sense, of their syndrome; to facilitate communication about the syndrome within the family, with friends and carers, teachers and those working in extracurricular settings; help patients recognise their abilities and limitations; promote their status as full citizens, despite their syndrome; prevent children fromthe ‘therapeutic odyssey’ experienced by their parents; to raise awareness of Ehlers-Danlos syndrome as a rare condition; to foster social connections amongst those affected; to carry out all manner of initiatives in support of those with Ehlers-Danlos syndrome; never to make a medical diagnosis; to provide financial assistance to members for out-of-pocket expenses incurred whenpurchasing orthoses, splints or any equipment they require to improve their quality of life; to support children in their schooling through the purchase of materials and interventions within

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