Rare Disease Day is February 28th. iCAN knows the importance of spotlighting all of our children from around the world for the ongoing and urgent need to create and implement pediatric research leading to a cure by sharing the needs of the youth community. If you would like to learn more about the International Children’s Advisory Network, contact us today!
“A central tenet to the work of NCD Child is youth engagement. These types of interactions can take many forms, but the most effective are naturally moments when we, as representatives from the coalition, are directly seeking input from young people. We strive to have a mutually beneficial partnership with several stakeholders, including youth (along with clinicians, civil society organizations, governments, etc). Our experience at the 2015 iCAN Summit is a perfect case study of taking the message directly to the beneficiary. While the overall focus of our session was to obtain feedback on a draft chapter on NCD prevention and treatment, the larger objectives went far beyond our round table discussions. We learned about the youth, why they were involved in iCAN, and how they planned to positively effect change. We recorded chapter feedback we had not previously heard – both from the youth and the parent volunteers. We spoke with the young people, not to the young people. While this is central to our mission, it is not always easy to do. NCD Child greatly appreciates the opportunity to work with so many distinguished, influential young adults. Certainly, we look forward to future collaborations and strongly encourage attendees to contact us should they want to get involved with NCD Child.”
“Active patient participation in medical product development and in healthcare in general is a major, positive trend. iCAN is unique in bringing the voices of children into the health arena. It is a special organization, global in reach, lead by children, and will (and is now already) having a real impact on how we think about pediatric clinical investigation and child health needs.”
“We all were proud of them, as we all know how difficult and intimidating it can be to stand up in front of a room full of adults and make a 10 minute presentation! Hadleigh and Hunter both have a bright future ahead; their presentation skills, communication skills and their professional presence were amazing for teenagers… Again, thank you so much for bringing the children’s perspective to our meeting. ”
“Dear Hunter and Hadleigh, thank you so much for coming to our meeting and explaining your activities in the KIDS network. We found your commitment very inspiring and a number of our guests commented that they do too. At least one of our participating hospitals said that they may wish to start a KIDS chapter for their institution. Great job! ….and great contribution”
“Thank you so very much for the survey monkey; the results confirmed some things as well as provided a glimpse of the different perspectives between children and adults; this information will also assist with my approach in an upcoming projects”
“As I was driving up from New York City to meet a group of K.I.D.S. kids, I was wondering how to present my ideas for creating a new kids version of my book, Write for Life: Communicating Your Way Through Cancer. I was hoping this group of kids ages 9-17 could give me some feedback on what works for kids coping with ALL kinds of stress in their life, whether they are sick, dealing with a sick family member or friend, or simply trying to make it through another day of their crazy teenage life. See, I figure that writing can help just about anyone—with anything. If you can write about what’s bugging you, you’re halfway towards figuring it out. If you write down what you want to say to somebody first, it makes it a whole lot easier to get the words out of your mouth in person. Whatever your reason may be, expressing yourself and communicating with others is a key to making the most of your life, and this is what Write for Life is all about. The kids of K.I.D.S. were terrific—willing to experiment, articulate with their responses and enthusiastic about learning new things. They participated in a sample mini-workshop, writing responses to prompts like “I AM,” “My To-Do List,” and “Personal Geography.” After each of the exercises, they shared what they wrote and their thoughts about the questions and prompts, themselves. The feedback was very helpful as I move ahead with the book. I look forward to working together at our next meeting in April. As for Write for Life: For Kids—By Kids, stay tuned!”
“I think this is a great way to help us to create more operationally feasible trials. Getting the perspectives of children will help us to pay special attention to details prior to startup. I think having a standard ‘KIDS advisory panel’ prior to the kickoff of any study would be good practice and would help with the implementation of our studies.”