Celebrating Rare Disease Day 2025

This past Rare Disease Day on February 28, 2025, our team came together to raise awareness, share patient and family experiences, and celebrate the work we’ve done so far while acknowledging the work yet to come as a network.

Table of colouring and activity books, glowsticks, cookies, and two teddy bears at London Health Sciences Centre. Photo courtesy of Cara Grobbecker.

Rare Disease Day banner at London Health Sciences Centre. Photo courtesy of Cara Grobbecker.

Podium and projection screen set-up for Rare Disease Day 2025 at London Health Sciences Centre. Photo courtesy of Cara Grobbecker.

In London, Ontario at the London Health Sciences Centre, our Clinical Trial Navigator, Cara Grobbecker, shared photos of their successful Rare Disease Day event. This year’s event was primarily organized by Dr. Tugce Balci and Dr. Sunita Venkateswaran, and saw many families and patients attend to share their stories at this day’s event. “We at Children's Hospital would like to extend thanks to everyone involved in celebrating Rare Disease Day, with a special thank you to all of the families who shared their stories. The day truly exemplified the NORD motto: Alone we are rare, Together we are strong.”

At the University of Saskatchewan, our Clinical Trial Navigator, Daislyn Vidal, spoke to CBC on their show The Morning Edition to discuss the importance of the RareKids-CAN network and improving access to clinical trials and treatments. Throughout their discussion, Daislyn highlighted the importance of advocacy to help improve this access, the work being done to help increase equitable access, and what she hopes to see for the future. Daislyn was also interviewed for the University of Saskatchewan’s College of Medicine, Department of Pediatrics’ YouTube channel where she discussed the history and importance of Rare Disease Day, Canadian statistics on rare diseases and pediatrics, and how RareKids-CAN is working to improve access to clinical trials and treatments.

RareKids-CAN is proud of all the important work that our Clinical Trial Navigators are doing across Canada – on Rare Disease Day and every day! Their commitment to advocacy and improving access within Canada and beyond is deeply appreciated!

You can learn more about all of our Clinical Trial Navigators and find the navigator in your area here.