Partnering with families through research
RareKids-CAN works to improve access to pediatric rare disease clinical trials for children, youth and families across Canada. We believe patients and families are essential partners in advancing knowledge and play a critical role in shaping better treatments, systems and outcomes.
Whether you are exploring opportunities to participate in a study, to partner in research or looking to better understand the pediatric rare disease landscape, we are here to connect children, youth and families with trusted information, resources and opportunities to get involved.
What we do
We promote partnership across the network. We are a community of youth, patient, and family partners who support engagement in ways that are thoughtful, meaningful, and connected to the priorities of the network. Our work aligns with RareKids-CAN’s three strategic priorities, helping to ensure that youth, patient, and family perspectives are reflected and integrated across the network’s activities and future directions.
Our core values
Our core values are influenced by CanChild Family Engagement in Research Program.
Mutual respect and equity
Youth, patients, families, researchers, and
clinicians are recognized as equally valuable contributors.
Meaningful partnership
Engagement goes beyond token participation. Youth, patients and families are invited to contribute at levels that match their interests, capacity, and goals.
Compassion and community
Relationships are grounded in empathy, trust, and belonging.
Impact through collaboration
Research and engagement activities are guided by the shared goal of improving outcomes and quality of life.
From participation to partnership
Search active pediatric rare disease clinical trials in Canada by condition to explore study details, eligibility criteria, and contact information. Use our clinical trial database to find trials that may be relevant to you or your child.
Patient and family engagement
RareKids-CAN works to improve access to pediatric rare disease clinical trials for children, youth and families across Canada. We believe patients and families are essential partners in advancing knowledge and play a critical role in shaping better treatments, systems and outcomes.
Whether you are exploring opportunities to participate in a study, to partner in research or looking to better understand the pediatric rare disease landscape, we are here to connect children, youth and families with trusted information, resources and opportunities to get involved.
What does engagement look like?
- Attending Coffee Chats and Community Meetings
- Accessing updates and resources via the network newsletter and our community resource board collections
- Partnering on short-term projects and one-time opportunities
- Consultation or advising via surveys and focus groups
- Partnering on longer-term projects across network programs and activities
- Joining a team to help plan, support, collaborate, or co-lead projects and activities
- Participating in engagement and presentation opportunities connected to network
“Engage patients and family members as equal partners and valued members of the research team”
Canadian Institutes of Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) (2011)
Coffee chats
Members of the RareKids-CAN Patient & Family Engagement team facilitates a regular virtual meetup for those impacted by pediatric rare disease. Coffee chats are informal, drop-in video conversations that bring together children, youth, families, caregivers, and others impacted by pediatric rare disease from across Canada.
Whether you’re looking to connect, share experiences, ask questions, or simply listen, you’re welcome to join us.
Upcoming Dates: TBD
Email Sara Pot to learn more: rkengage@mcmaster.ca
Our Commitment to Patients & Families
We are committed to creating research systems that are collaborative, inclusive, and centred around the needs of children and their families.
While RareKids-CAN does not provide medical care, counselling, or peer support groups, we aim to help families access research-related information, opportunities, and connections within the pediatric rare disease community.
RareKids-CAN’s engagement community leads
Andrea Cross
Sara Pot
Alicia Hilderley
Learn more
To learn more about about RareKids-CAN youth, patient, and family engagement work, email rkengage@mcmaster.ca
Have Questions?
RareKids-CAN is here to help. If you can’t find answers to your questions in our FAQs, please don’t hesitate to contact us.