Earlier this month, the RareKids-CAN community came together to connect, collaborate, and learn—both in person in Ottawa and virtually from coast to coast to coast and beyond! It was incredible to see so many familiar faces and to welcome new members, all united in our shared commitment to advancing pediatric rare disease clinical trials and treatments in Canada.

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.

Congratulations to network members Maureen Smith, Dr. Beth Potter and Dr. Lauren Kelly for receiving IHDCYH competition awards!

MICYRN (and by association RKC) officially signed an MoU with ECRIN, bringing us new opportunities for international collaborations.

RareKids-CAN is thrilled to congratulate Maureen Smith on her appointment to the Board of Directors for Canada’s Drug Agency (CDA) as its first-ever Patient Member!

A dedicated patient partner with RareKids-CAN, Maureen brings extensive leadership experience, including her role as co-Principal Investigator and Patient Engagement Strategy lead with INFORM RARE.

Andrea and her son Jakob, one of our incredible family partners, recently traveled to the U.S. to participate in a rare disease clinical trial, accessing a treatment not yet available in Canada. Their inspiring story highlights the urgent need for better access to clinical trials and treatments within Canada.

RareKids-CAN remains committed to transforming the Canadian rare disease landscape, ensuring more patients can receive lifesaving treatments at home.