About us

What is the Association de la Neurofibromatose du Québec?

This non-profit association was founded in March 1989 to help people with neurofibromatosis and their families and informed any person who might be interested in this genetic disorder.

The Association has the following objectives:

Bring together individuals

Bring together affected individuals and their families to provide them with moral support and help them maintain and improve their quality of life.

Promote knowledge

Promote medical research in order to improve the screening, treatment and care, as well as find a cure, for this genetic disorder, and raise awareness among the medical profession about the needs of affected individuals and their families.

Diffuse relevant information

Seek, translate, print, publish and distribute relevant documentation, produce a newsletter, L'Entraide NF, and disseminate any appropriate information related to neurofibromatosis through various means, including a Web site.

Raise funds

Organize information, training and exchange activities, conferences and lectures, and support the regional association of members and mutual assistance.

Promote research

Promote research

Need more information?

If you would like more information or want to attend our meetings, become a member or support our efforts through donations, please do not hesitate to contact us.

Board of Directors 2017-2018

Véronique Maheux


Nathalie Fontaine


Gabrielle Charron-Rainville


Olivier Caron-Lizotte

Board member (IT)

Jade Pauzé

Board member (Communications)

Realisations 2015-2016

Become a member

Becoming a member is free! Active members have the right to vote at general meetings and are invited to attend get-togethers and conferences.

Become a member