2022 Program Highlight: In the Room

In addition to the ever-growing content in the digital library and our many presentations to clinicians, industry and patient disease groups, CPN hosts live-streamed “In the Room” events on pressing issues for parents and the clinicians who care for these families. Some of these issues are niche (e.g., when the sick child is a twin) and some apply to many (e.g., supporting the siblings). Most events include a didactic component delivered by a clinician, followed by reflections from “experienced” parents. In the Room events are offered free of charge and are open to all. In 2022, CPN offered ten programs with 560 people attending. The events are made possible with grants from Sanofi, Astellas, RegenxBio, BioMarin, Amicus Therapeutics, and bluebird bio.

In the Room Topics:

Operating a Mini ICU; Providing 24/7 Care in the Home

The Primary Care Pediatrician: Quarterback of Your Child’s Care Team?

When the Child is a Twin

Continuing the Family Bonds and Honoring the Child’s Legacy

Financial Planning for Parents of Fully Dependent Children

A Screening of Unseen: How We are Failing Parent Caregivers and Why it Matters

Traveling with a Medically Complex Child

What It Means to “Just Show Up”

Talking to and Supporting the Siblings about Illness, Death & Grief

Does Spirituality and/or Religion Help?