Vaincre les Maladies Lysosomales, France
Anne-Sophie Lapointe has had 5 children, two of them have Hunter’s disease (MPS2).
She has been involved in the fight against rare diseases for 16 years as a member of Vaincre les Maladies Lysosomales, France. VML is a patients’ organization and founder of the French alliance (Alliance maladies rares).
In 2004 she joined VML’s families committee, which deals with families support. She was elected to the board in 2008 and became treasurer and vice-president. She has been chairwoman of VML since 2011.
She belongs to the Ethics Committee for Leukotreat Project (FP7), to the National Council of the French alliance and to the INSERM Ethics committee.
She believes in the action of patients’ organization in order to give comfort and means for the patients and their surroundings to recover their dignity. Through international network meetings, she knows the importance to work altogether towards common interests, the patient's and family’s care.
Anne-Sophie Lapointe has two Masters Degrees, one in Ethics and one in Economics.