ImproveCareNow Patients_&_families


Never stop sharing your story!

Recently, I sent my Grandfather from out of town a surprise package. I took the time to search through all of the wonderful LOOP posts made by PAC members and pulled out all the posts I have written. I compiled them into a word document and attached the pictures as well. I made the font decently big and separated each article to make it easy to read. I printed a copy, wrote my Grandpa a note and sent the package on its way to Pennsylvania.


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:


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.


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.


Two New Projects Funded in Year 3 of ImproveCareNow Patient and Parent Innovation Fund

We believe that many of the most innovative and potentially high-impact ideas for improving pediatric IBD care are likely to come from those living with the condition daily. Because of this, ImproveCareNow has continued to support innovative project ideas through the ImproveCareNow Patient and Parent Innovation Fund. The awardees for year three of this program have now been announced!


Join Us - Fall 2019 Virtual Community Conference

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 October 23 between 6 and 8pm eastern for our Fall 2019 Virtual Community Conference. Read more to see the agenda for this event.


ImproveCareNow Announces Round Three of Innovation Fund to Support Patient and Parent Projects

We know that many of the most innovative and high impact ideas for improving pediatric IBD care are likely to come from those living with the condition on a daily basis—ImproveCareNow (ICN) parent and patient partners. Previously, there was not a formal mechanism to encourage and provide support for projects proposed by these partners. While many successful projects have been carried out by dedicated parent and patient members of the ICN community, many more are not able to be advanced without funding and assistance.

In 2017, we decided to address these needs and advance projects that will make a difference in the lives of our community members. With support from the David R. Clare and Margaret C. Clare Foundation, we launched the ImproveCareNow Patient and Parent Innovation Fund. In the first two years, the Innovation Fund has supported three projects, and we are excited to announce that funding will continue with Round Three of the ImproveCareNow Patient and Parent Innovation Fund in 2019. 


Join Us - Spring 2019 Virtual Community Conference

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.


Growing Our Engagement Community – A How To Manual

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.


Ostomy Project Funded Through ImproveCareNow Patient and Parent Innovation Fund

We believe that many of the most innovative and potentially high-impact ideas for improving pediatric IBD care are likely to come from those living with the condition daily. Because of this, ImproveCareNow has continued to support innovative project ideas through the ImproveCareNow Patient and Parent Innovation Fund. The awardee for the second year of this program has now been announced!


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