Parents tell us...
"It would have been helpful to have someone in the beginning to talk to."
"I was scared to have a 'label' on my baby."
"I didn't know where to start after we got the diagnosis. Once I calmed down, I found good information, referrals, and next steps."
Learn about specific conditions/diagnoses
If your child has recently been diagnosed with a special health or genetic condition, information is critical. In order to identify the most reliable internet sites to research your child's condition, we recommend choosing sites that end in .edu, .gov, or .org. Learn more about finding trustworthy websites at Trust it or Trash It? and the OR F2F HIC tip sheet Finding Good Information.
Below are some trustworthy websites for information about hundreds of medical conditions. If you are unable to find your child's specific condition, we may be able to help. Call the OR F2F HIC 855-323-6744.
Doernbecher Children's Hospital: Condition information
John's Hopkins Medicine: Health library
Children's Minnesota Hospital: Education materials
National Organization for Rare Disorders: Rare disease information
National Institutes of Health: A-Z health conditions
Genetic and Rare Diseases Information Center: Condition Search Engine
Centers for Disease Control and Prevention: Condition fact sheets
Screening Technologies and Research in Genetics: STAR-G Medical fact sheets
Unique: Rare chromosomal guides
Genetic Support Foundation: Information about genetics and your family
Medical Home Portal: Diagnosis FAQ articles with information and resources
Child Neurology Foundation: Disorder directory with information and resources
If your child has been diagnosed with a life-limiting illness we hope these resources will be helpful to you in maintaining your family's quality of life.
Inclusion of resources on our site does not imply endorsement nor does exclusion mean we do not think it is valuable. We work to keep our list of resources current and relevant but it is not exhaustive.
Contact us: 855-323-6744 (English) 503-931-8930 (Spanish) firstname.lastname@example.org