Rare lung disease community empowered through connectivity

Feb 27, 2013, 10:40 ET from Canadian Pulmonary Fibrosis Foundation

Unique educational and support group toolkit -- a vital resource for IPF community

TORONTO, Feb. 27, 2013 /CNW/ - To mark the sixth international Rare Disease Day, the Canadian Pulmonary Fibrosis Foundation (CPFF) has launched its new website, www.cpff.ca. The online hub serves as a communal resource for patients and individuals affected by idiopathic pulmonary fibrosis (IPF), a rare, progressive and uniformly fatal lung disease that affects an estimated 5,000 to 8,000 Canadians.  The new website enables IPF patients, their families, and caregivers to access information and resources about all stages of the disease, and offers support tools for use at the community level.

Rare disease, common challenges

Hundreds of patient organizations around the world will unite tomorrow (February 28) to observe international Rare Disease Day by participating in awareness-raising activities. According to the Canadian Organization for Rare Disease (CORD), 1 in 12 Canadians have a rare disorder, and many others are affected or at risk, but remain undiagnosed and unaware.  People affected by rare disease face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support service for the patient and family.  It is vital to raise awareness for those stricken by rare diseases to ensure that they are provided with the tools, resources and support required to overcome common obstacles in their life.

"Given the fast changing landscape for the treatment of IPF in Canada, it is crucial for patients to stay connected and current on new treatment options available to them, and be able to access the best possible care to help them fight their disease," said Robert Davidson, president and founder of the CPFF.  "Up until now, the lack of available tools and resources has left many within the IPF community feeling helpless and alone.  Connectivity can be very empowering, especially for patients who have difficulty with their mobility."

New resources breakthrough isolation

To address the needs of the IPF patient community, the new CPFF website includes an important new section on advocacy and support, which features the IPF Patient Education and Support Group Toolkit.  This new resource developed to help patients, their family members and caregivers build and manage new patient support groups throughout Canada, will assist in connecting and strengthening the IPF community.  Comprised of six modules and other supporting documents, the toolkit will assist individuals interested in planning and executing IPF patient support groups in their communities, either in person or online.

"The IPF toolkit is an exciting and unique development for those affected by this devastating disease," said Dr. Meena Kalluri, respirologist, University of Alberta, who helped develop the resource.  "It's the first of its kind for the IPF community in Canada, and enables individuals affected by IPF to connect quickly and easily to access the necessary information and support."

Led by a steering committee comprised of IPF specialists, including Dr. Kalluri, as well as members of the CPFF, and the Ontario Lung Association, the development of the IPF Patient Education and Support Group Toolkit was made possible through a grant from InterMune Canada Inc.  With the addition of a new community forum on the CPFF website, members of the IPF community now have a variety of ways to connect with others affected by this devastating disease to share stories and information, and to get support and resources to help them achieve the best possible outcomes and quality of life.   Through the new website, patients and caregivers can find specialized clinics and healthcare providers across Canada, as well as information about community events, volunteer and fundraising opportunities and updates on research and new treatment options.

"It is vital for people diagnosed with a rare disease like IPF to stay connected with the patient community - it's a lifeline to helpful resources and support," added Davidson.

About IPF:

IPF is an interstitial lung disease with no known cause, characterized predominantly by fibrosis (scarring) of the alveoli (air sacs) in the lungs.  In patients with IPF, the lung tissue becomes scarred and over time, the scarring becomes thicker and more widespread, causing the lungs to lose their ability to transfer oxygen into the bloodstream.  This disease is more common in men than women and is usually diagnosed between the ages of 40 and 80 years.  Studies suggest that 5,000 to 8,000 Canadians suffer from IPF, with an estimated 3,000 to 5,000 having a mild to moderate form of the disease.  There are an estimated 3,000 deaths each year in Canada associated with this disease.

About CPFF:

The Canadian Pulmonary Fibrosis Foundation (CPFF) is a registered not-for-profit charitable organization established to provide support, hope and resources for those affected by idiopathic pulmonary fibrosis.  Robert Davidson, president of the CPFF, who himself had IPF and survived through receiving a double lung transplant in January 2010, created the organization in 2009 to provide education and support for people affected by pulmonary fibrosis, and to help answer those non-medical questions frequently asked by those suffering with the disease. The CPFF works closely with the medical community - and with support from Canadians - will help to develop treatment, find a cure, build awareness and provide much needed support to all affected by pulmonary fibrosis.

If you or someone you know has been diagnosed with IPF, visit cpff.ca today to learn what resources are available to you.

SOURCE Canadian Pulmonary Fibrosis Foundation