Rare Disease Campaign 2023

People with a rare disease need equitable access to healthcare

Diagnosis is lagging and treatment access varies across Canada

Rare disease stats 1/3
of patients feel they don’t have effective care. Among visible minorities this rises to 50%
Rare disease stats 20%
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 PF patients.

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.

Rare Tenacity
Determination
Rare Courage
Breathless for Change Documentary Youtube
Take the CPFF Pucker Up Challenge!
A Quick Overview of PF

It is with great sadness that we announce the passing of André Plouffe on March 19, 2022. André was an inspiration to us all and we offer our deepest condolences to their families and our community. We continue to share his story to build awareness around this devastating condition.

Pay Tribute to a Rare Individual

MAKE A DONATION TO SEND A TRIBUTE OR MEMORIAL CARD

Rare Bravery
Rare Inspiration
Rare Blessings
Rare Tenacity
Rare Heart
Rare Friend

Ask Your Elected Representative to Take the Pucker Up Challenge

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 breathe. 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.