First Social Network for Canadian CF Patients Launched Today: The 'My Cystic Fibrosis Canada' Network
TORONTO, May 15, 2013 /CNW/ - Cystic Fibrosis Canada launched the My Cystic Fibrosis (CF) Canada Network today, Canada's first-ever social network designed specifically for CF patients, by CF patients, to connect and share important information about living with this fatal genetic disease. The network is available on www.mycfnetwork.com and includes a compelling launch video featuring Canadians with cystic fibrosis who helped develop and test the new network.
"Together with our generous partners, we are constantly exploring new ways to improve the lives of Canadians living with cystic fibrosis," said Maureen Adamson, President and CEO of Cystic Fibrosis Canada. "The My CF Canada Network is specifically designed for Canadians living with this devastating disease. It is a forum where they can connect and support one another from coast-to-coast. By providing a platform for enhanced patient engagement, the CF community can actively participate in their own care, which has proven to lead to improved health outcomes and quality of life."
With nearly 4,000 CF patients across Canada, connecting Canadians with cystic fibrosis is more important than ever before. People with cystic fibrosis should not meet in person in order to control the transmission of dangerous infections and to protect their health. The My CF Canada Network is an online forum where CF patients can connect and can help make living with this disease a less isolating experience.
"The My CF Canada Network is a unique and rare opportunity for Canadians living with CF to be able to connect with each other," said Carly Stagg, member of the Adult Cystic Fibrosis Advisory Committee (ACFAC), who advises Cystic Fibrosis Canada about the challenges facing adults with cystic fibrosis. The committee played a critical role in bringing the network from concept to reality. "When people with CF sign up, and bring their friends and family along, they're going to be able to have conversations in private forum in a way they never could before."
The My CF Canada Network is the first and only social network of its kind in Canada where Canadians with this disease can:
- Discuss the treatments, programs and services available in their province/region
- Video chat and instant message with others
- Share stories and personal issues
- Share and discuss news about the latest research in Canada and abroad
- Receive support for advocacy and fundraising initiatives from a much broader community
Cystic Fibrosis Canada acknowledges Novartis Pharmaceuticals Canada Inc. for the collaboration that has made the My CF Canada Network possible. This innovative patient portal was developed by blueband digital.
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. As improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung disease. There is no cure.
Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world's top three charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada. Since 1960, Cystic Fibrosis Canada has invested almost $150 million in leading research, care and advocacy, resulting in one of the world's highest survival rates for Canadians living with cystic fibrosis. For more information, please visit www.cysticfibrosis.ca.
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NOTE TO MEDIA: To view and download the broadcast-ready launch video for the My CF Canada Network in English, please visit: http://www.vvcnetwork.ca/cf/20120501/.
In French, please visit http://www.vvcnetwork.ca/cf/20120501/fr/.
SOURCE: Cystic Fibrosis Canada
For further information:
National Media Contact:
Melinda McInnes, Communications Director
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 240
Toll free: 1-800-378-2233 ext. 240