Living with cystic fibrosis has for mission is to promote and foster the quality and living conditions of people living with cystic fibrosis.
Become the reference in support and accompaniment of people living with cystic fibrosis, and be the leader in information dissemination.
Respect : placing people at the heart of our mission, taking into account the relationship with others for the sake of inclusion, dignity and consideration. Offer everyone the opportunity to express their full potential, taking into account each person’s specificities.
Equality : promote, defend and allow equal opportunities, whether in terms of health (access to quality care, regardless of social, economic or demographic status), employment, access to housing, or any another area, avoiding any form of discrimination based on stereotypes.
Mutual aid : advocate values such as collaboration and teamwork to provide spontaneous, positive and caring support to each member of our community. Ensure personal or collective well-being, and promote the development of everyone through effective collaborative practice coupled with a keen sense of altruism.
Integrity : favor consistency, transparency, authenticity and honesty in our commitments and responsibilities towards our community, as well as in all spheres of our activities, in order to create a solid and lasting relationship with all our audiences .
- Promouvoir et protéger les droits et les intérêts des personnes vivant avec la fibrose kystique
- Représenter et défendre les personnes du Québec vivant avec la fibrose kystique auprès des instances gouvernementales ou autres
- Diffuser de l’information fiable
- Offrir du soutien aux personnes vivant avec la fibrose kystique
- Promouvoir les saines habitudes de vie des personnes vivant avec la fibrose kystique
- Offrir de l’aide directe
The Québec Cystic Fibrosis Adult Committee was created on October 17, 1985. At that time, Québec counted approximately 200 adults with CF (16 years old and older). Life expectancy at this time was 23 years, but everything suggested that it would improve and consequently the number of adults with cystic fibrosis would increase.
In 2015, we became Living with Cystic Fibrosis
The transition to the adult world was particularly complex for those with severe organic disabilities. The idea of grouping together, creating a committee that worried about their quality of life, has come a long way. And it is with enthusiasm that six adults with cystic fibrosis (Mario Gagné, Lise Tardif, Dora Dubé, Nancy Lefrançois, Marc Fortin and Serge Benjamin) and Laval de Launière, then social worker at the hospital’s cystic fibrosis clinic Sainte-Justine, have joined forces to bring our organization to life.
Social workers in all CF clinics played a crucial role in the establishment of the Committee. They have worked to make the nascent organization known to their clientele. Through them, Living with Cystic Fibrosis succeeded in drawing up a list of members representing almost all adults with cystic fibrosis in Quebec. From the outset, the Canadian Cystic Fibrosis Foundation (now Cystic Fibrosis Canada) and the Quebec Cystic Fibrosis Association (now Cystic Fibrosis Quebec) have ensured the economic survival of Living with Cystic Fibrosis. Their financial contribution was all the more appreciated because Living with Cystic Fibrosis, while pursuing goals different from theirs, sought to distance itself in order to better affirm the specificity of its mission, whereas the first mandate of its two main sponsors was to fund research and raise public awareness of the disease.
The Journey of Living with Cystic Fibrosis was marked by two decisive events in which it was able to establish itself firmly and establish itself as a distinct and autonomous entity. The first event is the creation of the SVB, an information document that is updated annually and intended for adults with cystic fibrosis in Quebec as well as stakeholders working with them. This annual publication will later become our official journal and will remain for the latter the ideal tool enabling it to achieve the objectives of the educational component of its mission.
The second important event is the installation of our organization at “629” (residence located at 629, Prince-Arthur Street West, Montreal). This residence will become a real home port for the organization and its members, thus allowing the pursuit of the objectives of the psychosocial part of the mission. Over the years, Living with Cystic Fibrosis has consolidated its organization by ensuring a true democratic life and by incorporating into its social mission another dimension: that of the promotion, defense and protection of the rights and interests of CF people in Québec.
Today, we have more than 950 members, about 90% of adults with cystic fibrosis and living in Quebec.
ADMINISTRATORS MEMBERS OF THE EXECUTIVE COMMITTEE
Vice-president, Internal affairs
Montréal representative (1/2)
Vice-president, External affairs
National Capital – Chaudière-Appalaches representative
Special Advisor to the Board
Ann Julie Desmeules
Saguenay – Lac-St-Jean Representative
Outaouais – Abitibi-Témiscamingue representative
Côte-Nord et Nord-du-Québec representative
Transplanted or awaiting transplant representative
Associate members representative
* Persons without Cystic Fibrosis
By supporting Living with cystic fibrosis you allow us to continue our mission undertaken more than 30 years ago:
- Soutien pour l’achat de matériel médical
- Soutien pour l’hébergement de personnes FK ou de leur entourage
- Production de guides sur la maladie
- Service d’écoute et de soutien
- Référencement pour aide urgente et/ou récurrente diverse
- Défense des droits et intérêts des personnes vivant avec la fibrose kystique auprès des instances gouvernementales, publiques et privées
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