Cystic Fibrosis Canada is a 3-star rated charity with best practice in financial transparency and above average accountability to donors as seen in the A results reporting grade. For every dollar donated to this charity, 53 cents go to the cause. This falls outside Ci's reasonable range for overhead spending.

Founded in 1960, Cystic Fibrosis Canada (CFC) aims to end cystic fibrosis by funding research for a cure and advocating for high-quality patient care. Cystic fibrosis (CF) is an inherited disease that can cause severe damage to the lungs, digestive tract, and other organs. It involves uncontrolled mucus buildup in the body, which can lead to nutrient deficiencies, chronic infections, and death in most patients. Cystic Fibrosis Canada states that CF is the most common fatal genetic disease affecting Canadian children and young adults. It currently estimates that more than 4,332 Canadians live with CF. CFC’s main office is in Toronto.

Cystic Fibrosis Canada runs four main programs: Research, Healthcare, Education, and Advocacy.

Education programs were 35% of program costs in F2021. CFC maintains the Canadian Cystic Fibrosis Registry, a collection of national CF patient data to measure trends in CF and improve understanding of CF among medical professionals. In F2021, the charity also developed two reports on cystic fibrosis standards of care to expand clinical knowledge.

Research represented 29% of program spending in F2021. CFC’s research funding has resulted in many significant developments in CF research, including the discovery of the CF gene in 1989. In F2021, Cystic Fibrosis Canada funded 26 active clinical trials that saw 185 participants. The charity also published two reports on how covid-19 affects people with cystic fibrosis.

Advocacy represented 20% of program costs in F2021. Cystic Fibrosis Canada runs provincial and national advocacy campaigns to raise awareness and increase support for CF patients. In F2021, the charity sent 224 letters to the editor and 5,500 letters to MPs. The charity also sent 1,850 letters to the Patented Medicine Prices Review Board and secured 40,000 signatures for a petition.

Healthcare programs made up 15% of program costs in F2021. CFC funds a network of 42 CF clinics across Canada. The charity also runs a Healthcare Advisory Council that meets three times a year to provide guidance on issues that affect these clinics. The charity also awarded two fellowship grants to physicians that will specialize in cystic fibrosis care.

The remaining 1% of program spending was allocated to other costs.

Cystic Fibrosis Canada reported $10.4m in donations in F2021. Administrative costs are 12% of revenues (less investment income) and fundraising costs are 35% of donations. This results in total overhead spending of 47%. For every dollar donated to the charity, 53 cents go to the cause. This falls outside of Ci’s reasonable range for overhead spending, which has been the case for the past three years.

CFC has $10.5m in total funding reserves, of which $94k is donor-endowed. Excluding donor-endowed funds, the charity can cover 221% or 2.2 years of annual program costs with its reserves.

This charity report is an update that has been sent to Cystic Fibrosis Canada for review. Changes and edits may be forthcoming. 

Updated on July 22, 2022 by Angelina Curwin.