ImproveCareNow Talking_about_ibd


Episode 35 of the imPACt podcast - Health Maintenance with Dr. Sabina Ali

ImPACt Podcase episode description: Shira and Becky are joined by Dr. Sabina Ali to talk about how keeping in regular contact with providers helps improve care.

The moral of the story in episode 35 of imPACt is: don't do what Becky did. 


Episode 34 of the imPACt podcast - Patient Engagement Guru, Sydney B

We've been getting to know ICN staff members through our imPACt ImproveCareNow network series (last time we talked with Chris Keck about why storytelling matters). In this episode, join Caitlyn, Vanessa and I (Fionna) for a chat with Sydney Bogardus who supported the PAC and the PFAC (Patient/Family Advisory Council) for several years before taking on another role in ICN.


Our top 10 blog posts of 2022

LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.


Episode 33 of the imPACt podcast - Pediatric IBD Patient Autonomy

Autonomy means being in control of your own decisions. For pediatric patients living with IBD, there comes a time when you get to start making decisions about your health and care more on your own. Join me (Hannah), Leela, Kera, Fizza and Ryleigh for a chat about patient autonomy in IBD care.


Episode 32 of the imPACt podcast - What Patients Need From Providers with SWAP

We are excited to welcome back former PAC co-chair, Dr. Jennie David (now a licensed pediatric IBD psychologist) as a host for this episode of imPACt. During episode 32 we talk about whole person care in IBD and get to ask a psychologist, social worker, and medical provider (nurse practitioner) how they came to work in pediatric IBD and how they learned about the mental health components of IBD.


IGNITE - My friend...IBD

What if your closest friend had a habit of interrupting your plans and not listening when you begged them to stop? You might might wish to end that friendship. But, as Mahalakshmi points out in her #IgniteTalk, which she shared at both our in-person and our virtual community conference this fall, when "friend" is really a metaphor for IBD there isn't really a choice. 

Be inspired by Mahalakshmi's #IgniteTalk 🔥 


IGNITE - IBD is a marathon AND a sprint

Inspiring, honest and motivational. Those were the words used to describe IBD parent, Ildiko's #IgniteTalk. In it she reminded us all of the critically important and unique perspective that parents and caregivers of young people with IBD bring to the discussion. She asked us to remember that while we collaborate on the big challenges that IBD presents, there are also small things we can do to make a difference right now (like watching our language). And she issued a call to action for us to work together to make truly meaningful progress in outcomes for kids with IBD and also to really believe that radical, transformative progress is possible.

Be inspired by Ildiko's #IgniteTalk 🔥


Episode 31 of the imPACt podcast - @BowelSounds Collaboration #WhatIWishYouKnew

Join me (Fionna) and my fellow PAC members, Christian and Shira for our conversation with the hosts of the NASPGHAN podcast, Bowel SoundsDr. Temara Hajjat and Dr. Jason Silverman. We discuss what we wish providers knew from the patient perspective and uncover what providers wish patients knew. 


Episode 30 of the imPACt podcast - High School, College, Grad School & IBD

Join me (Vanessa), Hannah and Fionna for our conversation about IBD during different stages of schooling. Between the three of us, we have lived experiences with both Crohn's disease and ulcerative colitis, with being diagnosed at different life stages (during early education and in high school) and with balancing high school, college and grad school with IBD.


Join Us - Fall 2022 *VIRTUAL* Community Conference

We are hosting a Fall 2022 Virtual Community Conference as a way for us to connect, share information and updates, and learn from each other. This event is online, and is free & open to all who want to attend. We are keeping it brief (90 minutes), conveniently timed (6:30-8pm ET/3:30-5pm PT) and flexible - making it easy for you to drop in for some or all of the event. Our content is all intentionally focused toward patients and caregivers living with IBD. So, please join us (and invite someone you care for to join us) for #ICNVCC on November 9 from 6:30-8pm ET/3:30-5pm PT. 


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