Rare Disease Campaign 2023
People with a rare disease need equitable access to healthcare
Diagnosis is lagging and treatment access varies across Canada
of patients feel they don’t have effective care. Among visible minorities this rises to 50%
didn’t get an oxygen prescription when needed
Rare Diseases Affect 1 in 12 or Nearly 3 Million Canadians
Rare Disease Campaign: February 28 – March 31
People with rare diseases systematically experience barriers to accessing healthcare. Canadians living with pulmonary fibrosis (PF) face the same reality in part due to lack of awareness and understanding of this disease.
February 28, 2023 is Rare Disease Day. Join us in raising awareness and funds to help advocate for more equitable access to diagnosis, treatment, and support for the 30,000 Canadians affected by PF.
Early Diagnosis is Key
Since it’s a rare disease, PF is not top of mind for most family practitioners. The recent 2022 CPFF Patient and Caregiver Survey highlights that many patients wait two or more years for a confirmed diagnosis. It’s important to build more awareness to shorten the time between a patient experiencing their first symptoms and getting a final diagnosis since most of the medications work by delaying the progression of the disease. The sooner a diagnosis is made, the sooner treatments can start, and the more impact can be made in keeping a PF patient stable at a less severe stage of the disease. Explore diagnosis resources.
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.
It is with great sadness that we announce the passing of André Plouffe, John Dennis, and Rob Garbutt. These patients featured in the CPFF documentary were an inspiration to us all and we offer our deepest condolences to their families and our community. We continue to share their stories to build awareness around this devastating condition.
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 2023, 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.