Highlighting Youth Partner, Simone, for International Youth Day!
Headshot of Simone Kumar, Youth Partner
Meet Simone
Meet Simone – one of RareKids-CAN’s youth partners! An enthusiastic undergraduate student at the University of Toronto, Simone is currently pursuing a degree in Life Science with a focus on Neuroscience. With aspirations of attending medical school and obtaining an MD/PhD, Simone has been making a difference in the rare disease space for years.
In high school, Simone’s interest in research and passion to pursue a healthcare career led her to become involved with KidsCan Young Persons Advisory Group (YPAG), a national initiative in Canada aimed to increase the engagement of pediatric patients in all phases of the research process. Drawn to their focus on the behind-the-scenes aspect of research, such as diverse participant recruitment and knowledge mobilization, she quickly became an active member. Her dedication soon led her to become involved with RareKids-CAN through our Transition to Adulthood sub-platform.
Why She Got Involved
Simone brings her valuable perspective of transitioning from pediatric to adult care and living with a rare disease to the team. Her journey guides her to continue sharing her experiences and input to help improve this experience for others. Recently, she’s begun contributing to a scoping review exploring how youth with lived experiences of a rare diagnosis experience the transition from pediatric to adult care and how this could be improved.
A highlight for Simone of becoming involved with RareKids-CAN has been the opportunity to meet a diverse and dedicated team – from researchers to parents to other youths. “Every month at our meetings is a chance to learn and discuss something new,” she remarks. “Being able to learn, grow and understand from these different perspectives has been amazing.” One experience that stands out for Simone was attending this past year’s Rare Disease Day at SickKids, where she presented a research poster and participated in meaningful conversations on rare disease research and initiatives.
Looking Ahead
Simone wants to see more research being done for rare diseases in Canada. She notes how there continues to be a big gap in funding and awareness of rare diseases throughout Canada. By improving knowledge, awareness and understanding of rare diseases, she hopes that this could help all members of the rare disease community receive the necessary treatments and support that they need. She also hopes to see the transition from pediatric to adult care become more standardized and cohesive in the coming years.
Simone’s voice and perspective are a critical component of patient engagement in rare disease research. RareKids-CAN is extremely proud to highlight her contributions as one of our valued youth partners to help shape a more inclusive and informed future for rare diseases in Canada.