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Spring 2020 LIVE Online Community Conference - Pathway to the Future

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.

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The PAC wants to connect with you and have some fun together

Hi, it’s Christian – co-chair of the PAC! I’m really excited to let you know that the PAC is once again offering ICN gear in our online shop. This year, we’ve added some new hoodies and sweaters in gray, black and white. And you’ll find some other fan favorites: t-shirts, coffee mugs, pillows, and more! To get your ICN gear, please visit: https://teespring.com/stores/2020-icn-store

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PAC members discuss wellness, creativity, self-care and community

Wellness means different things to different people at different times. And while no single path leads us definitively toward or away from wellness, investing time in the things we love, making supportive connections with friends and family, and caring for ourselves can have an impact. PAC members – Becky, Linden and Quint – share their thoughts on wellness, creativity, self-care and community in this post.

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Information about the novel coronavirus (COVID -19) for IBD patients and families

SARS-CoV-2

image credit: NIAID-RML

Many IBD patients and their families are concerned about the novel coronavirus (COVID-19) and the impact it may have on their lives, their care and their wellbeing. Please note: IBD patients and families seeking specific information about the novel coronavirus and their medical care are advised to communicate directly with their care team. While ImproveCareNow is not in the business of providing direct medical advice, we are in the business of connecting people, learning together and sharing information seamlessly. We'd like to share some information that may be useful to you:

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My Biggest Struggle is Dealing with an Invisible Disease

Hello, my name is Allison. I was diagnosed with Crohn's disease at the age of seven. Currently, I’m a first-year college student. Something interesting about me is that I have two older sisters and two brothers-in-law.

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Chronic illness can't be solved like an equation.

I’ve been watching a show called New Amsterdam. As a person who lives with Crohn's disease, I really appreciate the way the writers try to incorporate healthcare in such a patient-focused way. There’s a quote I really like from the show about importance of patients being the experts:

“...Leave the quantifiable behind and rely instead on experience.”

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Staying warm and comfortable during infusions

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.

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Navigating Empathy and Emotional Labor with Patient Advocates

My name is Catalina - I’m a current co-chair of the ICN Patient Advisory Council, a social/clinical research assistant at the University of North Carolina and will be starting medical school soon. I recently gave a presentation at the Anderson Center for Health Systems Excellence about emotional labor, empathy and how to navigate these concepts when working with patient advocates. I wanted to share some of my talking points with you here.

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Having support keeps you grounded.

Lately, I’ve been reflecting on the importance of having a support system. Whether it be friends, family, or even strangers…in that Facebook group you joined a few weeks ago. Having support keeps you grounded, and I find it can have beneficial effects on both my mental and physical well-being.

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