RAREKIDS First Mile Fund
The RAREKIDS First Mile Fund is designed to help children and families take part in investigator-initiated pediatric rare disease clinical trials in Canada when travel creates an added barrier to participation.
Established through an anonymous $250,000 donation to RareKids-CAN, the fund can help cover reasonable and necessary travel and accommodation costs for eligible participants and, when needed, their caregivers or family members. The goal is to make it easier for families to access clinical trial opportunities, regardless of where they live in Canada.
Apply for RAREKID First Mile Travel Fund
Read below for more information about eligibility for the travel fund.
Who may apply
Requests must be submitted by the Principal Investigator (PI), Qualified Investigator (QI), or an authorized member of the Canadian research team conducting the clinical trial.
Patients and families cannot apply directly.
The research team that submits the request is responsible for coordinating approved travel support with participating patients and families. The research team must also ensure that all expenses follow the approved funding request and comply with applicable institutional financial policies and research ethics board requirements.
Eligibility criteria
1
Pediatric rare disease condition
The trial must include conditions with an Orpha code on Orpha.Net or has a prevalence of less than 1 in 2,000
2
Investigator initiated
The clinical trial must be investigator initiated
3
Conducted in Canada
The clinical trial must take place at one or more Canadian research institution, academic centre, or hospital
4
Interventional clinical trial
The trial must be a Health Canada regulated, interventional clinical trial
5
Travel required for participation
The protocol must require participants to attend a study site or other approved trial location and the requested travel must be necessary for participation in protocol-required activities
6
Active participant enrolment
The participant for whom travel support is requested must be actively enrolled in the clinical trial during the period for which support is sought. Active enrolment includes participants who are receiving study treatment or intervention, as well as those who remain in a protocol-defined follow-up period
7
Protocol available for RareKids-CAN review
A current version of the clinical trial protocol must be provided to RareKids-CAN to confirm eligibility and determine whether the requested travel is necessary for study participation
8
Funding period
All approved funds must be expended by March 31, 2029. Requests should therefore reflect anticipated recruitment, follow-up, and travel requirements that can reasonably occur within this timeframe
Eligible participants and travel companions
Eligible participants and travel companions include:
- Pediatric patients (under the age of 18) enrolled or being screened for participation in an eligible clinical trial
- A parent, guardian, or caregiver where their presence is necessary to support the child’s participation
- Additional family members or caregivers only where justified by the participant’s age, medical needs, disability, family circumstances, or clinical requirements
RareKids-CAN may request justification where travel support is requested for more than one accompanying caregiver or family member.
Eligible expenses
Eligible expenses may include reasonable and necessary costs associated with protocol-required trial participation, including:
• Economy airfare
• Train, bus, or other public transportation
• Mileage or ground transportation
• Taxi or rideshare costs where appropriate
• Parking
• Hotel or other reasonable accommodation
• Per diem costs for meals
• Other necessary travel-related costs directly associated with attendance at protocol-required study visits
Where possible, recipients should use the most economical and practical travel arrangements while considering the participant’s medical, accessibility, and family needs.
Travel expenses that are already covered by another funding source should not be claimed through the RAREKIDS First Mile Fund.
Ineligible expenses
The following expenses are not supported:
- Travel unrelated to participation in the clinical trial
- Investigator, research staff, or study team travel
- Conference attendance
- Travel for observational studies, registries, or natural history studies
- Travel for routine clinical care that is not required by the research protocol
- Luxury or premium travel unless medically necessary and specifically approved
- Expenses already reimbursed through another program, sponsor, institution, insurer, or charitable organization
- Costs incurred after March 31, 2029
RareKids-CAN may consider exceptional circumstances on a case-by-case basis where there is a clear rationale related to equitable participant access.
Questions?
Contact us if you have any questions about the RAREKIDS First Mile Fund