Rare Disease Campaign 2024
People with a rare disease need equitable access to healthcare
Diagnosis is lagging and treatment access varies across Canada
of patients wait for over 3 years for a diagnosis
didn’t get an oxygen prescription when needed
Rare Diseases Affect 1 in 12 or Nearly 3 Million Canadians
Rare Disease Campaign: February 29 – March 31
Canadians living with a rare disease like pulmonary fibrosis (PF) face barriers to healthcare in part due to lack of awareness and understanding of this disease.
February 29, 2024 is Rare Disease Day. Help us raise awareness and funds to help advocate for more equitable access to diagnosis, treatment, and support for the 30,000 Canadians affected by PF
Early Detection is Key
Since it’s a rare disease, PF is not top of mind for most family practitioners. The 2022 CPFF Patient and Caregiver Survey highlights that many patients wait two or more years for a confirmed diagnosis.
PF symptoms cannot be reversed by the treatment medication, only slowed down. More awareness by the public and medical professionals can result in earlier diagnosis so treatments can start sooner for patients at a less severe stage of the disease.
Tackle the Crackle
Early detection is vital to slowing down the disease, so primary care professionals as well as all Canadians need to know PF can start with these common symptoms:
Persistent cough that won’t go away after more than 3 months
Shortness of breath after physical activity that was typically not a problem
Ongoing fatigue, weight loss
If you have any of these symptoms ask your Dr. to listen for the tell-tale lung crackles.
Pulmonary Fibrosis Looms Large for a Growing Number of Canadians
Pulmonary Fibrosis Risk After COVID-19
Research studies done across the world are shedding light on the growing rate of pulmonary fibrosis (PF) being found in people suffering from long-term COVID-19.
One study, Post COVID-19 pulmonary fibrosis; a meta-analysis study, found that almost 45% (44.9%) of study participants began suffering from PF after contracting COVID-19.
Many with connective tissue diseases are also more prone to PF
Tune in as Dr. Janet Pope shares what you need to know about interstitial lung disease (ILD) in connective tissue diseases.
The researchers also show significant increases in PF for the hundreds of thousands of Canadians suffering from connective tissue diseases such as rheumatoid arthritis, myositis, lupus and scleroderma.
Celebrating Rare Individuals
Despite challenges, people living with PF show amazing determination and courage. Explore patient and family stories, take the Pucker Up Challenge, and learn more about pulmonary fibrosis.
Pay Tribute to a Rare Individual
MAKE A DONATION TO SEND A TRIBUTE OR MEMORIAL CARD
Ask Your Elected Representative to Take the Pucker Up Challenge
As part of Rare Disease Campaign 2024, contact your MPP or MLA and ask them to take the CPFF Pucker Up Challenge to experience what it feels like to work hard for every breath. Your local representative can show their support by recording themselves taking the challenge and providing a 30-second video message to be shared with our community and the public. Help us build awareness and secure more equitable healthcare access for people living with PF.