Medical/Health and Wellness Resources
The Compassionate Friends (TCF) is a self-help bereavement organization, providing support to bereaved parents, siblings, grandparents, and close family members who are going through the natural grieving process following the death of a child of any age (from pre-birth to adult) from any cause.
TCF resources include:
- Grief materials and information for the newly bereaved
- A meeting locator tool to help you find a chapter near you
- An online support community and live chats
- A downloadable, online magazine
- A comprehensive list of similar nonprofit organizations
Complex Care at Home for Children
The Complex Care at Home for Children website aims to provide an educational resource for parents and caregivers of children with medical complexity. The site offers information and tools to help facilitate daily care, ensuring a safe environment for the child and family. Topics include:
- Tracheostomy and other types of respiratory care
- Peritoneal dialysis
- Enterostomy care
- Enteral nutrition
- Parenteral nutrition
- Intravenous antibiotic therapy
- Intermittent bladder catheterization
Comprehensive Community Based Youth Services (CCBYS)
Comprehensive Community Based Youth Services (CCBYS) serves youth ages 11 to 17 who are involved in the legal system or at risk of crisis (homelessness, etc.). CCBY provides programs to help stabilize families and prevent or minimize involvement in the child welfare and/or juvenile justice systems. Anyone can request services for an eligible youth, including the youth.
CCBY services include:
- Assessments
- Statewide 24/7 crisis intervention services
- Juvenile justice system intervention services
- Placement services for crisis youth – shelter, foster care, etc.
You can contact the toll-free CCBYS Information Line at (877) 870-2663.
Congenital Heart Defects (CHDs) Fact Sheets and Articles
Congenital heart defects (CHDs) are conditions that are present at birth and can affect the structure of a baby’s heart and the way it works. The Centers for Disease Control and Prevention (CDC) provides fact sheets, articles, patient stories and more to help you understand CHDs and their affect across the lifespan.
Conquering CHD provides awareness, knowledge, community and research to conquer congenital heart disease and defects (CHDs).
The Conquering CHD website includes resources to help patients and caregivers understand CHDs from childhood through the teen years and adulthood.
Conversation Guides for End-of-Life Care
The Institute for Healthcare Improvement (IHI) provides free Conversation Guides to help you have conversations with a family member, friend, or other loved one about your – or their – wishes for care through the end of life.
All the guides are available to download and print at home for free. The guides include:
- Your Guide to Choosing a Health Care Proxy
- Your Guide to Being a Health Care Proxy
- Your Guide to Talking With a Health Care Team
- What Matters to Me Workbook
- Guide for Caregivers of a Child With Serious Illness
The guides are available in English, Spanish, Portuguese and Chinese.
Cook For Love is a nonprofit organization providing support, resources and education to individuals, families and clinicians managing phenylketonuria (PKU). The site empowers members of the metabolic disorders community to improve their health through cooking and education.
Cook for Love’s website includes:
- Recipes for creating low-protein foods
- Information about low-protein products to keep in your pantry
- Step-by-step instructions
- Videos for making meals and treats
The Courageous Parents Network (CPN) is a nonprofit that aims to empower, support and equip families and providers caring for children with a serious medical condition.
CPN presents educational resources in an array of formats — including video, audio story, downloadable guides, blogs, events and more — with a singular goal: to give parents confidence that they are being the best possible advocate for their child. Curated resources include:
- Navigating medical complexity
- NeuroJourney – information and support for families grappling with the medical, social and emotional aspects of Severe Neurological Impairment
- Coping with loss
The Centers for Disease Control and Prevention (CDC) provides a series of YouTube videos on COVID-19 with information in American Sign Language.
COVID-19 Vaccine Preparation Checklist for Kids
The COVID-19 vaccine is now recommended for children ages 6 months old and up. To help you prepare for your child’s vaccination, the American Academy of Pediatrics (AAP) provides information about the vaccine and a step-by-step checklist of questions or other health-related topics you may want to discuss with your child’s pediatrician or primary care doctor when scheduling your vaccine appointment.