{"id":165,"date":"2024-08-01T14:57:54","date_gmt":"2024-08-01T14:57:54","guid":{"rendered":"https:\/\/cape.childrenshospital.org\/?page_id=165"},"modified":"2025-10-16T15:20:18","modified_gmt":"2025-10-16T15:20:18","slug":"resources","status":"publish","type":"page","link":"https:\/\/cape.childrenshospital.org\/es\/resources\/","title":{"rendered":"Recursos"},"content":{"rendered":"

Support for families and caregivers<\/h2>\n\n\n\n

Navigating the complexities of care can feel overwhelming, but you don\u2019t have to do it alone. This section connects you to trusted services and guidance.<\/p>\n\n\n\n

Educational Resources<\/h3>\n\n\n\n

Courageous Parents Network (CPN):<\/strong> 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.<\/p>\n\n\n\n

Contact: info@courageousparentsnetwork.org<\/a> | courageousparentsnetwork.org<\/a><\/p>\n\n\n\n

Community Hospital Resource Hub (Connected Care): <\/strong>Run by SickKids and Ontario Health\u202fat\u202fHome, 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.<\/p>\n\n\n\n

Contact: connectedcare.sickkids.ca<\/a><\/p>\n\n\n\n

Organizing Medical Information<\/h3>\n\n\n\n

The Pouch \u2013 Kangaroo Kids: <\/strong>A comprehensive medical notebook for parents to organize all aspects of their child\u2019s care. Sections include medical history, appointments, logs (daily, therapy, infusion), medications, procedures, and emergency info.<\/p>\n\n\n\n

Contact: Request via online form at kangarookidsclt.org<\/a><\/p>\n\n\n\n

Care Notebook \u2013 Family to Family Health Information Center<\/strong>: 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.<\/p>\n\n\n\n

Contact: familyvoicesofwashington.org<\/a><\/p>\n\n\n\n

Support for Families and Caregivers<\/h3>\n\n\n\n

Federation for Children with Special Needs (FCSN): <\/strong>A nonprofit empowering families of children with disabilities through individual assistance, training, workshops, leadership development, and advocacy resources.<\/p>\n\n\n\n

Contact: info@fcsn.org<\/a> | fcsn.org<\/a><\/p>\n\n\n\n

Family TIES of Massachusetts: <\/strong>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.<\/p>\n\n\n\n

Contact: familyties@fcsn.org<\/a> | fcsn.org\/family-ties<\/a><\/p>\n\n\n\n

Superman Sam\u2019s Survival Kit (S3Kit): <\/strong>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.<\/p>\n\n\n\n

Contact: info@supermanskit.org<\/a> | s3kit.org<\/a><\/p>\n\n\n\n

Support for Siblings<\/h3>\n\n\n\n

Sibling Support Project \u2013 Sib Shops:<\/strong> 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.<\/p>\n\n\n\n

Contact: siblingsupport.org<\/a><\/p>\n\n\n\n

Financial Planning Support<\/h3>\n\n\n\n

NeuroJourney:<\/strong> Offers guidance for families managing complex medical care, including financial planning strategies and assistance navigating medical and insurance systems.<\/p>\n\n\n\n

Contact: neurojourney.org<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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