The Neuromuscular Disease Network for Canada

The NMD4C are excited to share MICYRN‘s success in securing a $20 million grant from CIHR Institute of Genetics to support the development and execution of RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network. Under the leadership of MICYRN’s Scientific Director, and Nominated Principal Applicant, Dr. Thierry Lacaze-Masmonteil, RareKids-CAN is a transformative initiative set to revolutionize the landscape of rare disease research and treatment for children and their families in Canada and beyond.  

At the core of RareKids-CAN is a coalition of diverse national and international experts including patient/family partners and patient organizations pooling their collective knowledge and experience in the pediatric rare disease community. Leveraging the strengths of MICYRN and its 17 maternal/child health research institutions, aimed at streamlining complex, pediatric, multi-center, multi-jurisdictional clinical trials, RareKids-CAN is primed for swift and effective operationalization. 

RareKids-CAN aims to establish a robust platform in Canada to support pediatric rare disease clinical trials, providing essential infrastructure and resources. It seeks to enhance capacity through comprehensive training and mentorship opportunities, attract international trials and investments, foster inclusivity, and improve accessibility. The network prioritizes data collection and analysis to inform decision-making, while also supporting increased submissions for Health Canada authorization, ensuring timely access to innovative therapies for those impacted by rare diseases.

NMD4C Investigators involved with RareKids-CAN network grant

The NMD4C is excited to support this initative – we were pleased to share a letter of support for the grant application, and celebrate the many NMD4C investigators who are a part of the RareKids-CAN network: 

• Dr. Leanne Ward (Executive Committee Member) 
• Dr. Alexandra King (Executive Committee Member) 
• Dr. Craig Campbell (Executive Committee Member) 
• Dr. Maryam Oskoui (Principal Applicant, Co-Lead of Health Economics, HTA and Reimbursement Sub-Platform) 
• Dr. Malcolm King (Co-Applicant, Working group member) 
• Dr. Homira Osman (Co-Applicant, Working group member) 
• Dr. Hanns Lochmüller (Co-Applicant) 
• Dr. James Dowling (Co-Applicant) 
• Stacey Lintern (Collaborator, Working group member)

For more information, please visit MICYRN’s website.