Today is Rare Disease Day. The global theme for this year’s Rare Disease Day is Research. “Research brings hope to people living with rare diseases” exclaims Canadian Organization for Rare Disorders (CORD); we here at Cystic Fibrosis Canada could not agree more. In this blog post, we’ve rounded up some highlights in Canadian CF research for you:
- The 2014 Canadian CF Registry Report was launched this past spring and revealed that in Canada, the median age of survival is 51.8 years – one of the highest in the world. View the full report here.
- A research team from the Hospital for Sick Children, including Cystic Fibrosis Canada-funded Dr. Nades Palaniyar, has been investigating the function of neutrophil extracellular traps (NETs), and their role in chronic inflammatory diseases, such as cystic fibrosis (CF).
- Cystic Fibrosis Canada fellow Dr. Émilie Vallières is currently completing her PhD at Queen’s University Belfast, where she was involved in several research projects focused on treating multiple bacterial infections in people with cystic fibrosis (CF). Her work will impact people with CF by shedding light on the best treatment approaches for bacterial infections in people with CF.
- Cystic Fibrosis Canada-funded Dr. Miguel Valvano completed a three year project in March 2015 that advanced our understanding of bacterial antibiotic resistance.
- In an effort to make updates about CF research more accessible and engaging, we have connected CF patients with researchers for Q&A Livestreams. Read about this experience here, and keep an eye out for future livestreams!
- Cystic Fibrosis Canada had papers published in three academic journals: Environmental scan of cystic fibrosis research worldwide, Health Human Resources Guidelines: Minimum Staffing Standards and Role Descriptions for Canadian Cystic Fibrosis Healthcare Teams, and Newborn Screening for Cystic Fibrosis in Canada Shows Benefits.
What is Rare Disease Day?
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness for people living with a rare disease and their families. Since its inception in 2008, Rare Disease Day is now celebrated worldwide in over 80 countries.