ICN PAC

@improvecarenow Patient Advisory Council; Fighting for IBD patients who live each day without a cure; making changes to healthcare one day at a time💩 #ICNPAC

[ICN PAC @ICNPatients]

Looking to connect with patients at #ICNCC23F? Look for a green lanyard and/or a gold nametag ribbon and feel free to say hello! (and check off a box on your scavenger hunt 😉) @ImproveCareNow

[ICN PAC @ICNPatients]

"If you were to ask me today, who I am. I would tell you that I am resilient and a fighter. That I am an advocate and a student and nature lover and a reader. But most of all, I am so much more than just a runner" Caitlyn finding her identity again #icncc24s

[ICN PAC @ICNPatients]

"I didn't have a place in the pediatric world, but I also wasn't accepted into the adult world." Amazing words from Caitlyn #icncc24s

[ICN PAC @ICNPatients]

"Though I still had pain and fatigue. I was in a much better place and I was pretty confident that I could put all of this behind me and get back to school..." PAC member Caitlyn explains how she worked through her Crohn's to get back to training for track #icncc24s

[ICN PAC @ICNPatients]

"thesummer before my freshman year of college, I started experiencing a intense abdominal pain with eating..." Caitlyn's experience with her dream of running D1 track being inhibited by her disease #icncc24s

[ICN PAC @ICNPatients]

Ready for the Patient Ignite Talk with PAC Member Caitlyn! #icncc24s

[ICN PAC @ICNPatients]

"Patients are the ones putting in the work like going to labs, advocating, taking the medications, and TDM allows us to understand why we're putting in all this work."

Wonderful words from Shira on how TDM is important for patients #ICNCC23F @ImproveCareNow

[ICN PAC @ICNPatients]

Very excited to hear Co-Chair Shira talk about why TDM is important during Pathway to Mastery: Clinical Standardization/Personalized Care #ICNCC23F !!

[ICN PAC @ICNPatients]

Such a beautiful speech from PAC Co-Chair, Kera. We love you!! <3 #ICNCC23F

[Sandra Kim MD @SCKimIBDMD]

“The doctors did the most important thing-they listened.” The power of words and reminder of the best tool we all possess as healthcare providers. Thank you, Kera, for giving us the gift of your story. #ICNCC23F @ImproveCareNow @ICNPatients

[ICN PAC @ICNPatients]

"Speaking from experience I've participated in [medical] research because there's no other option"

[Flat Jennie (Jennie David-Rodgers, Ph.D.) @Flat_Jennie]

Hearing about the origin story of the COMBINE study, including asking a parent of a young person with #IBD what he thought, and ultimately ended up as a landmark pediatric IBD study; a quintessential @ImproveCareNow story of engaging families & innovating together #ICNCCF23

[ICN PAC @ICNPatients]

PFAC member Carrie Ward suggests parents/guardians to "just keep calling" until the issue is figured out.

This is such a common experience among the chronically ill community and Carrie drills in the fact that you can't give up. #ICNCC23F

[ICN PAC @ICNPatients]

#ICNCC23F PAC Member Seth expands upon specific university accommodations that he's requested or suggests to other patients, such as:

- Stop the clock testing
- Excused absences
- Housing
-Dining

[ICN PAC @ICNPatients]

"...notify your patient/child that there are federal law forms that can assist your patient/child in managing school/work"

Fizza goes on to mention 504 plans and expands upon the importance of accommodations #ICNCC23F

[ICN PAC @ICNPatients]

Interesting discussion on a study done to determine trust between providers and caregivers/patients in the context of medical research happening right now at #ICNCC23F

[ICN PAC @ICNPatients]

"...notify your patient/child that there are federal law forms that can assist your patient/child in managing school/work"

Fizza goes on to mention 504 plans and expands upon the importance of accommodations #ICNCC23F

[Flat Jennie (Jennie David-Rodgers, Ph.D.) @Flat_Jennie]

Kera from the @ICNPatients emphasizing the role of multidisciplinary care, including RD and psychosocial expertise to understand food-related QoL and relationships with food, eating, and body image @ImproveCareNow #ICNCCF23

[ICN PAC @ICNPatients]

PAC Co-Chair Kera makes the great point of looking ahead at grocery stores and restaurants available in new areas during "Helping Patients Help Themselves" #ICNCC23F

[ICN PAC @ICNPatients]

Amie Moore on setting up centers to help patients with ostomies: "it's important to invest in your team. This patient population has the right to this care"

Extra training can be time-consuming but very much worth it to improve patient care #ICNCC23F #ibd

[ICN PAC @ICNPatients]

"I didn't like having my ostomy bag, but surgery changed my life for the better and I'm extremely glad I did it.

Despite complications, Leela was able to reestablish a normal life with her ostomy and j-pouch, and is now a thriving, happy college student <3 #ICNCC23F

[ICN PAC @ICNPatients]

Extremely valuable words from Heidi sharing her perspective as a parent. Leela is now sharing her experience as a patient with an ostomy.

She went from playing soccer and running cross country to being extremely ill from #ibd and eventually needed a colectomy. #ICNCC23F

[Flat Jennie (Jennie David-Rodgers, Ph.D.) @Flat_Jennie]

Heidi from the PFAC highlighting family voices about how ostomy-related discussions & care can be so variable regarding access to multidisciplinary care and psychosocial support. We need to do better, and we can do better TOGETHER. @ICNPatients @ImproveCareNow #ICNCCF23