Support for families and caregivers
Navigating the complexities of care can feel overwhelming, but you don’t have to do it alone. This section connects you to trusted services and guidance.
Educational Resources
Courageous Parents Network (CPN): CPN is a nonprofit supporting families and healthcare providers caring for children with serious illnesses. They offer a library of videos, podcasts, downloadable guides, and curated learning pathways covering decision-making, grief, sibling support, and end-of-life care.
Contact: info@courageousparentsnetwork.org | courageousparentsnetwork.org
Community Hospital Resource Hub (Connected Care): Run by SickKids and Ontario Health at Home, this hub offers self-directed education, webinars, and practical guides for pediatric home and community care. Topics include pediatric assessments, therapies, condition-specific management, and supportive care such as palliative care.
Contact: connectedcare.sickkids.ca
Organizing Medical Information
The Pouch – Kangaroo Kids: A comprehensive medical notebook for parents to organize all aspects of their child’s care. Sections include medical history, appointments, logs (daily, therapy, infusion), medications, procedures, and emergency info.
Contact: Request via online form at kangarookidsclt.org
Care Notebook – Family to Family Health Information Center: Tools to help families collect and organize critical medical and support information. Includes structured forms, checklists, emergency planning templates, and portable summaries. Available in English and Spanish.
Contact: familyvoicesofwashington.org
Support for Families and Caregivers
Federation for Children with Special Needs (FCSN): A nonprofit empowering families of children with disabilities through individual assistance, training, workshops, leadership development, and advocacy resources.
Contact: info@fcsn.org | fcsn.org
Family TIES of Massachusetts: A statewide program offering information and peer support for families of children with special health needs, chronic illnesses, or disabilities. Services include parent-to-parent support and a caregiver-to-caregiver respite network.
Contact: familyties@fcsn.org | fcsn.org/family-ties
Superman Sam’s Survival Kit (S3Kit): A nonprofit providing gift baskets with practical and compassionate items for families transitioning home with a child who has a tracheostomy. Free delivery across the contiguous U.S.
Contact: info@supermanskit.org | s3kit.org
Support for Siblings
Sibling Support Project – Sib Shops: Programs and workshops for siblings of children with disabilities, chronic illnesses, or mental health concerns. Sib Shops create a safe space for siblings to connect, share experiences, and access resources throughout their lives.
Contact: siblingsupport.org
Financial Planning Support
NeuroJourney: Offers guidance for families managing complex medical care, including financial planning strategies and assistance navigating medical and insurance systems.
Contact: neurojourney.org