Hi everyone! My name is Ryleigh, I'm 17, and I have Crohn's disease. I'm currently a senior in high school and plan to attend college in the fall. Something that most people don't know about me is that I used to be able to name over one hundred dog breeds when I was little, but I've forgotten a lot of them now.

Pediatric clinical trials face many barriers. They are too slow, too expensive and are often disconnected with the needs of the children and families they are supposed to help.

The Research Trailblazers – an ICN Learning Lab focused on improving pediatric clinical research – identified issues and barriers associated with participating in research studies and began to test and share strategies and best practices to close gaps related to successful trial enrollment, accelerating the pace of trial start-up, and developing more efficient processes across all phases of a research study.

A major accomplishment of this work is the information, knowledge and know-how collected in their Research Change Package - A Guide to Improving Your Research Journey.

On Thursday, September 24 & Friday, September 25, ImproveCareNow will host their second LIVE Online Community Conference (LOCC). Sessions begin on September 24 at 12:30 PM ET (11:30 AM CT, 10:30 AM MT, 9:30 AM PT) and continue through 5:00 PM ET when a causal Engagement and Social Hour begins. Sessions resume again on September 25 at 10:30 AM ET and continue throughout the day, with a wrap up scheduled for 4:35 PM ET. 

All are welcome to join us for this interactive, online event where we plan to all teach and all learn about topics including diversity & equity, patient & family engagement, the effects of COVID-19 on health and care, and our path forward with new ICN leadership.

My name is Jake and I’m a senior in high school. I was diagnosed with Crohn's disease in the fall of my junior year. One interesting thing about me is that one day I decided to take up running, so I signed up for the Atlanta marathon. After only a month of training I completed the marathon - this made me really fall in love with the sport!

On Friday, April 3, ImproveCareNow will host a LIVE Online Community Conference (LOCC). The LOCC will be preceded by a late breaking session on Telemedicine in Response to COVID-19 at 9:30am ET (8:30am CT, 7:30am MT, 6:30am PT) and the main event will begin at 10:30am ET (9:30am CT, 8:30am MT, 7:30am PT). 

All are welcome to join this free online event where we will be exploring ImproveCareNow's Pathway to the Future and how we can all continue to work together to transform health, care and costs for all children and adolescents with Inflammatory Bowel Disease.

The National Alliance for Caregiving (NAC) has released a report on caregiving of individuals with Inflammatory Bowel Disease (IBD). Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD – Crohn’s disease and ulcerative colitis.

The full results of the survey can be viewed online at http://www.caregiving.org/ibd

Hi, my name is Rishi, and I’m a 19-year-old Medical Sciences undergrad as well as a Student Researcher at a Children’s hospital. I was diagnosed with Ulcerative Colitis in August of 2016, but most people outside of the IBD community have no idea I have IBD. In addition, many people do not know I lived in the National Radio Quiet Zone for a month last summer: no internet, no cell phone service…nothing!

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on May 2 between 6 and 8pm eastern for our Spring 2019 Virtual Community Conference. Read more to see the agenda for this event.