Diagnosis Related Links

The following is a list of websites that provide information on specific diagnoses. Many organizations have compiled comprehensive Internet resources on diagnoses and conditions. The links below will direct you to those organizations.

Cancer

National Cancer Institute website provides comprehensive information about various types of cancer.

Cerebral Palsy

These websites provide comprehensive information to assist families and professionals with their search for essential information and access to resources compiled by Support for Families and the United Cerebral Palsy Organization.

Development (Including Developmental Disabilities)

National Institute for Child Health and Human Development provides information regarding child development and developmental disabilities.

Down Syndrome

Comprehensive information compiled by Support for Families to assist families and professionals with their search for essential information and access to resources.
Down Syndrome Information packet

National Organization for Down Syndrome
National organization with resources specific to down syndrome

Mental Health

American Academy of Pediatrics provides information on children’s mental health in primary care.

National Institute of Mental Health

Centers for Disease Control and Prevention Mental Health Workgroup

Support for Families - Mental Health resources

Search Engines/Information on Multiple Diagnoses

The Center for Children with Special Needs collected resources and information related to select diagnoses.

Disability Info – New Freedom Initiative’s online resource for individuals with disabilities has a list of resources for various conditions

Medline Plus provides information on over 740 health topics including conditions and wellness.

National Dissemination Center for Children with Disabilities
NICHCY compiles disability-related resources in each state, and creates State Resource Sheets.

Support for Families Internet Resources about Families of Children with Disabilities
Support for Families compiled Internet resources that fall into two general categories. The first group lists websites that will provide access to information about a very broad range of disabilities, including rare disorders. The second category includes sites that focus on specific disabilities.

Utah Medical Home Portal Diagnosis Modules
The Utah Medical Home Portal offers useful, reliable, relevant information, tools, and resources to aid in the care of children with chronic and complex conditions. The portal includes diagnosis modules for the following diagnoses: Asthma (pediatric), Autism Spectrum Disorder, Celiac Disease, Cerebral Palsy, Down Syndrome, Duchene Muscular Dystrophy (1/3500 males), Hearing Impairment, Hurler syndrome (Mucopolysaccharidosis type I), Intellectual Disability / Mental Retardation, Neurofibromatosis, Type I, Seizure Disorder, Spinal Cord Injury, and Traumatic Brain Injury.

WebMD
Website that provides basic information on both acute and chronic conditions.

National Dissemination Center for Children with Disabilities (NICHCY)
NICHCY serves the nation as a central source of information on disabilities in infants, toddlers, children, and youth; IDEA, which is the law authorizing special education; No Child Left Behind (as it relates to children with disabilities); and research-based information on effective educational practices

National Organization for Rare Disorders (NORD)
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them.