My Child's Diagnosis: Information and Support

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 (English) o 833-990-9930 (español)                                                                   

John's Hopkins Medicine: Health library  

SAMSHA: Mental health services publications searchable database

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

Mitochondria Action types of mitochondrial diseases 

Screening Technologies and Research in Genetics: STAR-G Medical fact sheets

Unique: Rare chromosomal guides    

Genetic Support Foundation: Information about genetics and your family

National Society of Genetic Counselors: Find a Genetics Counselor

Medical Home Portal: Diagnosis FAQ articles with information and resources

Child Neurology Foundation: Disorder directory with information and resources

Get organized

Use tools to stay organized.

OR F2F HIC tip sheet: "My Child's Team"

OR F2F HIC tip sheet: "My Emergency Support Team"

Swindells Resource Center: Care notebook (English)  Care notebook (Spanish)

OR F2F HIC tip sheet: My Family's Care Coordinators

OR F2F HIC tip sheet: Using Voicemail to get the information you need  Voicemail (Spanish)

Guidebook for Caregivers of Children with Rare Serious Illnesses

Guidebook for Children or Youth Newly Diagnosed with Epilepsy

Undiagnosed conditions

GARD: Tips for the Undiagnosed

Journal of American Medical Association: "I am That Parent"

Life-Limiting Illness

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. 

Guidebook for Caregivers of Children with Rare Serious Illnesses


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.

If you have any questions call or email us tel. 855-323-6744 (English) o 833-990-9930 (español)