Our partner, Thrust, is looking for iCAN Youth Members to help with beta testing.
In game development, before releasing the game officially, it is often first released in two stages called the alpha and beta phases. In the beta phase, the game is likely to contain a number of issues and bugs and we need your help to make sure we find them all! We’ll also value any and all input you have to make our game as fun as possible!
In partnership with the Pediatric Trials Network (PTN), we are seeking two parents of young children that have experienced acute pain. The two selected parents will be asked to join the external advisory board for the Clinical Outcome Assessments for Acute Pain Therapeutics in Infants and young Children (COA-APTIC), aimed at developing a core set of clinical outcomes assessments for infants and young children (0 – 2 years of age) undergoing treatment for acute pain. To participate, please send an email using the link below.
Attention: YOUTH MEMBERS LIVING WITH A RARE CONDITION!!!!
We need 3-4 youth diagnosed with a RARE illness, ages 8 -19 to particpate in an all-expense paid trip to "Advancing the Development of Pediatric Therapeutics (ADEPT 6) Workshop", November 11th-12th, 2019.
This will include time as part of speaking panel, plus personal interviews. Questions to be provided in advance. Must be willing to share diagnosis.
iCAN is looking for four kids to tell their stories on "Empowering the Patient" October 8 at 3:30 PM at the Cobb Galleria, Atlanta, GA.
iCAN Asthma Kids
Due: March 1st, 2020
Thrust Interactive is developing a gamified asthma app that empowers kids (and parents), by providing personalized support to help make managing asthma as simple and easy as possible. Treks identifies the challenges that a child has with treatment adherence and guides them on a personalized treatment support journey in an engaging and motivational way.
Treks is currently in development and we need your help! We need feedback from kids and parents to help us make Treks as fun and engaging as possible. To get that feedback we are inviting iCAN members to join the Treks Asthma Advisory Council. As part of this select group, you will have the opportunity to share your thoughts and provide product direction. You will get a first look at Treks and when it's ready for testing, you will get to try it out for yourself. During this time, we may send out short surveys, and ask you to text us your ideas as they come to mind, or schedule a phone call with us and others on the Advisory Council to brainstorm ideas on how to make Treks better.
If you're interested, please reach out directly to our Director of Innovation and Research, Shane Owens at firstname.lastname@example.org. Thank you for your consideration!
iCAN has a new opportunity for kids ages 1-17 (parents can share on behalf of younger ones) to share their voice through a special survey designed just for them. To take the survey, click below. Your thoughts matter!
One of our international community partners, PARADIGM, would like some feedback to better understand what kids think of research, so that they can more effectively help to promote 'patient-centered care' that supports our young person. Attached are two informational sheets - one for kids and one for parents.
FDA Patient and Caregiver Connection Program
Due: October 31st, 2019
iCAN would like to help the FDA to promote the Patient and Caregiver Connection program by sharing your experience with specific diseases and devices. The goal of sharing this information is to better understand the youth population. This survey is less than 4 minutes long.
We are looking for youth interested in representing iCAN at the American Academy of Pediatrics conference. You will present our organization at the iCAN booth. A parent or guardian must accompany each iCAN youth member. This event will be held in New Orleans, Louisiana.
NORD's Policy team is conducting a survey to help guide our future work. We invite you to take a moment to share your experience to help us better prioritize the needs of rare disease patients and families just like you--by taking the survey below.
Aug 18- Aug 20, 2019
We are seeking youth members to attend the PEDS2040 Conference in Huntington Beach, CA. Youth members will be asked to work at an iCAN table and attend or assist with the Young Inventor Workshop. A parent or guardian must accompany each iCAN youth member.