Aim of the association :
The association strives to:
Group patients, informing them about the opportunities for care, it provides valuable support and is an essential link between the patient and the medical world.
The psychological support especially when parents discover the existence of the disease, especially if at birth, their child has symptoms of the disease; discussion with other parents who have experienced this problem can understand its importance but also to avoid despair.
The association organizes meetings between members that promote the exchange of ideas and "gestures" to facilitate care.
The association helps patients and their rights to obtain reimbursement for their care.
Obtain drugs from pharmaceutical companies to reduce costs of care.
To provide the accompaniment of life for respiratory failure.
To involve the patient because the patient wants to participate in treatment decisions, be more involved, participate in public debate on research and health policy, and the patient's status is changing there, of the sick patient through associations became carriers of social demands, an actor playing an active role to play both with respect to his doctor that the choices of society. To fight for themselves and other victims of the same pathology is one way to overcome his own suffering, his own illness and shoulder his destiny
Gifts usage :