Oui Oui! I didn’t get send a postcard so this blog post will have to do! Last month I had the honor of attending the International Children’s Advisory Network (iCAN) summit in Lyon France with my colleague and good friend and multiple time author, Parent Leader and Patient Advocate, Jennifer Degl. As newly appointed Co-Leaders of the expanded iCAN Parent Council, we are bringing parents together to give a voice around advocating for our children, our families and more. Sadly I only attended part of the summit due to coming down with the flu (in summer, how very pandemic!!!) but was able to help run our first in-person iCAN Parent Council Meeting with Jen. Check out this amazing recap video from the 2022 summit! Bookmark this page for future updates on the next summit here.
Bolstered by support from the pharmaceutical, medical, research realms, iCAN has become a force to be reckoned with as they push forward the children’s voices to the forefront where they deserved to be all along. Questioning research and medical experts, these young folk are vocal and clear that they want more
done to help support pediatric healthcare, clinical research, innovation and technology advancement. Reviewing and approving everything from hospital protocols to including popsicles for the patients to providing review and approval on a number of measures across medicine, the global group of youth are on a mission. Added to their ranks: siblings, youth living with non-rare disease , and now parents collaborate to create an even bigger vision to the community at large.
As a thank you to members, the chapter heads are able to award a limited number of stipends to assist with travel to the annual in-person summits that occur in Europe in even years and in North America in odd years. Membership within iCAN is not only growing but flourishing, and thanks to our implementation of the new iCAN Parent Council, we know we will see even more growth and participation.