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