Skills and Strategies for Healthcare Decision-Making with Children

Being a decision-maker for your own healthcare is important. Families and healthcare providers want
children to become good decision-makers. For some children this takes more support, practice, and
some special tools. Learning this skill should begin in childhood and continue into adulthood. This
guide and its resources help families and healthcare providers support children to learn the skills
they need. This resource was created in partnership with Jennifer Banna, former URLEND family trainee and
current Montana Family to Family Health Information Center Coordinator
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The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses

The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts. The extensive array of topics covered in this Guidebook (nearly 100) underscores the many aspects of life and care that are impacted when caring for a child with a rare disease.
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Child Neurology Foundation

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures. Our expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care — and the highest quality of life—for every child. Provides tools, resources, disorder directory, peer support, and medical information.
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Centers for Disease Control Birth Defects

The CDC works to identify causes of birth defects and opportunities to prevent them. These websites have information in Spanish and specifically cover current scientific findings and public health interventions and practical information for families facing these disabilities.
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El CDC trabaja para identificar las causas de defectos congénitos y las oportunidades para prevenirlos. Estos sitios web tienen información en español y cubren específicamente los hallazgos científicos actuales y las intervenciones de salud pública e información práctica para las familias que enfrentan estas discapacidades.
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Pacer Center

The Pacer Center offers several programs for children with disabilities and mental health challenges including a parent information center, a national bullying prevention center, a health information center, a technology center, and newsletters and publications.
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The Journey Through Diagnosis: A guide for families of children with a genetic condition

This guide provides information and support to families whose child has been identified with a genetic condition. The guide is written from the family perspective and covers a variety of topics, including emotions, family relationships, obtaining information and support, medical care, medical insurance, and finding your voice.
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Asthma Initiative of Michigan

The Asthma Initiative of Michigan (AIM) site was developed to provide access to information about asthma and Michigan's asthma activities, and help partners communicate. AIM sought the help of asthma experts from across the state from public and private agencies with knowledge in the areas of clinical care, education, environmental quality and surveillance to develop a resource repository.
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Centers for Disease Control Vaccines & Immunizations

The Centers for Disease Control site provides in-depth information on vaccines & immunizations for various populations and age groups and provides various resources.
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Los Centros para el Control de Enfermedades proporciona información detallada sobre vacunas e inmunizaciones para diversas poblaciones y grupos de edad y tambien proporciona varios recursos informativos
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