IGNITE – A Parent’s Perspective on Healthcare Learning Networks
Ignite Talks are a true highlight of ImproveCareNow Community Conferences – whether we are meeting in-person or live online. This spring, at our Live Online Community Conference, we were honored to listen as >” rel=”noopener” href=”http://improvecarenow.org/tags/jane_weyer” target=”_blank”>Jane Weyer shared her personal story as parent to a child diagnosed not only with Crohn’s disease, but also Primary Sclerosing Cholangitis (PSC) – an autoimmune liver condition affecting around 30,000 people in the US. Jane, and her daughter Nicole, didn’t have the information or resources they wanted at the beginning of their PSC journey. So, they rolled up their sleeves, leaned on the strong foundation of connection and improvement built by the ImproveCareNow Learning Health Network, and together with other visionaries founded A-LiNK (the Autoimmune Liver Disease Network for Kids). A-LiNK Connections, the caregiver/patient community, was established to collaborate, advocate, support, and educate families on this journey with them.
