Links - ACFCQ

INFORMATION ON DISEASE

Guide on Cystic Fibrosis (In English and French)
www.cfeducation.ca
This site is sponsored by Roche and is prepared by health professionals, including nurses, a nutritionist and a physiotherapist. It contains information about the disease, the respiratory system and the digestive tract. A special section called "Vivre avec la FK" [living with cystic fibrosis] provides all types of complementary information.

Passeport Santé (French only)
www.passeportsante.net/fr/Maux/Problemes/Fiche.aspx?doc=fibrose_kystique_pm
Information and practical solutions promoting health, disease prevention and alternative medicine.

Wikipedia (multilingual)
http://en.wikipedia.org/wiki/Cystic_fibrosis
Collective encyclopedia offering free, neutral verifiable information.

Orpha.net (French and English)
www.orpha.net/
Portal for rare diseases and orphan drugs.

    - Foundations and Associations

Fondation l'air d'aller (In French only)
www.fondationlairdaller.org
Organization for persons with cystic fibrosis aimed at improving their quality of life by offering physical, psychological and financial assistance.

French Association for the Fight Against Mucoviscidosis (In French only)
www.vaincrelamuco.org
Official site of the French Association for the Fight against Mucoviscidosis. Information about the organization.

Belgian Association for the Fight Against Mucoviscidosis-AFLM. (In French only)
www.muco.be
Site of the Belgian Association for the Fight against Mucoviscidosis. Information about the disease, as well as links to other sites.

Quebec Cystic Fibrosis Association - QCFA (In French only)
www.aqfk.qc.ca
Official site of the Quebec Cystic Fibrosis Association.

Canadian Cystic Fibrosis Foundation - CCFF (In English and French)
www.cysticfibrosis.ca
Canadian Cystic Fibrosis Foundation site. Information about the disease, research, resources, etc.

MucoDreams (In French only)
www.mucodreams.com
Blog and forum of the Association française Étoiles de neiges. This association supports young people with cystic fibrosis through sports, getaways and meetings with champions.

Forum linked to the Association ActionMuco (In French, English section available)
http://actionmuco.aceboard.fr
Friendly gathering spot for persons with cystic fibrosis and their families and sympathizers.

Cystic Fibrosis Foundation (English)
www.cff.org
American Cystic Fibrosis Foundation site that contains a wealth of information on the disease, treatments and research.

Mucoviscidose-Innovation (In French only)
www.mucoviscidose-innovation.org
Association whose goal is the development and validation of scientific apparatus, devices and treatments for improving the health and quality of life of persons with cystic fibrosis.

    - Organizations

Cysticfibrosis.com (In English)
It's the 10 year anniversary of CysticFibrosis.com, an American cystic fibrosis Web site. If you are interested in clinical practises in the United States and in Canada's English-speaking provinces, feel free to visit the discussion forum: http://forums.cysticfibrosis.com
You may also create your own cystic-fibrosis-related blog at the following address: www.cysticfibrosis.com/blogs.cfm

Cystic Fibrosis Worldwide (English)
www.cfww.org/
Cystic Fibrosis Worldwide (CFW) formed after the merger of the International Association of Cystic Fibrosis Adults (IACFA) and the International Cystic Fibrosis Association. Its goal is to improve quality of life for people with cystic fibrosis around the world by promoting access to care and providing information in developing countries.

CF-WEB (English)
Online Information about Cystic Fibrosis.
www.cystic-l.com
American site. Support and discussion groups, information, links to other sites.

    - Other sites

Fibrose Kystique (In English and French)
www3.nbnet.nb.ca/normap/CF.htm
Personal Web site designed by Norma Plourde, an adult with cystic fibrosis.
This bilingual site contains a wealth of information about cystic fibrosis.

Valérie's Blog (In French only)
http://valerie.gosselin.over-blog.com/
She talks about her experience with cystic fibrosis and the philosophy of life that she is trying to adopt in order to live with the disease more easily. She is a psychologist and a member of the Ordre des psychologues du Québec, and offers on-line consultations.

MuCoBloG (In French only)
http://mucoblog.free.fr
This blog is managed by Cyrielle, who is 18 years old and has cystic fibrosis. She calls it mucoviscidosis because she lives in Europe and that is the term used there. The site contains information about the disease, as well as links, addresses, personal photos, quotes, glimpses of other people with cystic fibrosis and her friends, and much more.

La mucoviscidose, un combat de tous les jours (In French only)
http://lamucoviscidose.over-blog.com
This blog was created by a 29-year-old adult who was diagnosed later in his life with cystic fibrosis.

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TRANSPLANTATION

Canadian Organ Donors Association (CODA) (In English and French)
www.acdo.ca
The main mission of this association is to ensure emergency transportation of organs for transplantation, with the support of various police forces. Every year CODA organizes a special ceremony to give thanks and pay tribute to the families of donors and to live donors.

The Fondation des greffés pulmonaires du Québec (In French only)
www.fondationdesgreffespulmonairesduquebec.org
Established in 1996, the Fondation des greffés pulmonaires du Québec is a non-profit, non-subsidized association.
Its purpose is to meet the essential needs of patients who are waiting for a lung transplant or who have had one. It offers accommodation, transportation, meals, parking and any other specific needs.
It also provides needy patients with devices, drugs and other products recommended by the transplant clinic but not covered by insurance on a pay-as-you-can basis.

Canadian Transplant Association - CTA (In English and French)
www.organ-donation-works.org
The Canadian Transplant Association is a non-profit organization created in 1987 to raise awareness about organ donation and celebrate the success of transplants. It is made up of transplant recipients, athletes and volunteers dedicated to promoting organ donation through events including the National Transplant Games and World Transplant Games.

Canadian Council for Donation and Transplantation (In English and French)
www.ccdt.ca
The mission of this council is to coordinate and enhance the development of Canada’s OTDT community by working collaboratively to improve the collective performance of the system for donors, recipients, and their families.

Canadian Association of Transplantation (English)
www.transplant.ca

Health Canada (In English and French)
A Coordinated and Comprehensive Donation and Transplantation Strategy for Canada

Quebec Transplant (In French only)
www.quebec-transplant.qc.ca
Quebec-Transplant is the official organization mandated by the Health and Social Services Ministry to ensure the coordination of organ donation in Quebec. Its mission is to coordinate and facilitate all activities related to the identification of the potential donors, the attribution and the procurement of human organs in order to contribute to the continuous improvement of the quality of services offered to the people in need of organ transplantation. Statistics available. In English and French.
Click on www.signez.ca, which was designed to raise public awareness about organ donation. To request organ donation stickers, click here.

La Fondation Diane Hébert (In French only)
www.fondationdianehebert.org
This foundation helps people go through the waiting period and the post-transplant period and helps increase the number of potential donors by organizing regional and provincial awareness campaigns.

La Maison des greffés du Québec (In French only)
www.maisondesgreffes.com
Established by Lyna Cyr, the Maison des greffés du Québec is a residence for persons living outside the Montreal area who have had a transplant or who are waiting for an organ.

AirMédic (French only)
www.airmedic.net
The Fondation AirMédic is a non-profit humanitarian organization that provides air ambulance services.

Fais le don! (In French only)
http://faisledon.blogspot.com
Blog by Jean-Éric Ouellet, who received a double lung transplant in 2004 and is a member of the Adult Cystic Fibrosis Committee of Quebec (ACFCQ), representing Quebec adults with cystic fibrosis who have received a transplant or are awaiting a transplant. The purpose of this blog is to inform people about organ donation and encourage them to donate.

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PARTNERS

Confédération des organismes de personnes handicapées du Québec (COPHAN) (In French only)
www.cophan.org
A non-profit organization dedicated to defending the rights and promoting the interests of persons of all ages with functional limitations.

Service bénévole de l'Est de Montréal (SBEM)
www.sbem.org/index_en.php
The SBEM is a non-profit organization that has been providing Montreal's east end community with volunteer services and mutual assistance for over 25 years. Every year, it relies on a network of over 200 social and humanitarian organizations and over a thousand volunteers, all active partners in developing volunteerism in the east end of Montreal.

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COMMERCIAL LINKS

Dymedso
www.dymedso.com
Information about the Frequencer, a new respiratory physiotherapy device.

Ovo
http://www.cliniqueovo.com/english/index.asp
Fertility clinic.

BlueSkin
http://www.blueskin.ca/english/index.html
Anti-bacterial gel dispenser.

VitalAire
www.vitalaire.com
Home oxygen and aerosol therapy.