Events

Over the past three years, researchers and family leaders from across the country have partnered to develop a national research agenda focused on improving the health care system for children and youth with special health care needs. Their first product, a newly published article titled Improving Health Care Transitions for Children and Youth with Special Health Care Needs, is one in an eight-part series to be published as a supplement to Academic Pediatrics.
 
In this webinar, the article's authors will discuss the health care transition process for adolescents and young adults with special health care needs, describe their study's findings, and reflect on the implications of their recommendations. We suggest that attendees read the article prior to the webinar. Audience Q&A is highly encouraged.

This work is led by the Children and Youth with Special Health Care Needs Research Network (CYSHCNet). CYSHCNet was founded in 2017 through a cooperative agreement with the Health Services and Resources Administration’s Maternal and Child Health Bureau.

 A planning committee of the National Academies of Sciences, Engineering, and Medicine is hosting a three-day public workshop to explore the challenges and opportunities related to building an optimal integrated care system for people with intellectual and developmental disabilities (IDD). Presentations and discussions will explore models of care, workforce issues, and financing and payment for care. The virtual workshops will take place on December 8, 10, and 14, from 1-4pm EST. The event agenda is here (PDF).

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6) is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.

During this webinar, the Institute for Patient- and Family-Centered Care (IPFCC) will share results from their recently-conducted national study of Patient and Family Advisory Councils (PFACs) in children's hospitals.

Presenters will discuss key learnings about the prevalence and characteristics of PFACs in children’s hospitals, and how PFACs adapted during the COVID-19 pandemic. Attendees will also learn about a new resource that provides guidance on strengthening partnerships with patients and families in children’s hospitals.

Read the agenda here.

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6) is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6) is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6) is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.

The Summit is targeted for a multidisciplinary audience to highlight skills specific for providers who are interested in learning more about pediatric palliative care practice, techniques and teamwork. Hosted by George Mark Children’s House, the Summit will be in-person with session recordings available on November 10, 2021.

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6) is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6) is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.