Feb. 28 is Rare Disease Day in Canada, a day to remind us that equitable care means recognizing the unique needs of Indigenous communities.
A recent article from Pewaseskwan team members, who form the Indigeneity sub-platform at RareKids-CAN, highlights this important work!
The team is working to ensure that culturally informed considerations are integrated into clinical trial design, implementation and execution so that Indigenous children and families have equitable opportunities to participate in pediatric rare disease clinical trials and access innovative treatments in Canada. The sub-platform is guided by the Indigenous Community Guiding Circle, a diverse group of Knowledge Holders.
Michelle Paquette, the Indigeneity sub-platform Lead Coordinator, emphasized the importance of this collaboration, noting that “during on-going engagement, the Knowledge Holders have voiced their appreciation of the network’s openness to First Nation, Métis and Inuit voices as we work towards our common goal of more inclusive pediatric rare disease clinical trials.”
She added that the team is hopeful the collaboration will lead to meaningful and positive changes for Indigenous people experiencing rare disease diagnosis. Other Pewaseskwan team members on the sub-platform include Anum Nooruddin (Research Associate) and Carrielynn Lund (Project Manager).
Read the full article here: https://www.rarekidscan.com/…/key-considerations-for…