My Child's Diagnosis: Information and Support

Parents tell us...

baby smiling

"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.  I didn't look at all the papers I got during my son's diagnosis, for awhile.  Once I calmed down, I found good information, referrals, and next steps." "At our one month follow up we asked for help in setting priorities and getting started with the Autism Parent Training Program and Occupational Therapy." "My daughter is 12 now, I am still learning about her diagnosis and future."

Learn about a diagnosis  I Trustworthy information  I  Get Organized I Emotional support  I Undiagnosed

Find helpful information about hundreds of medical conditions and diagnoses.                                                                           

John's Hopkins Medicine: Health Library  

SAMSHA: Mental Health Services Education Materials

Children's Minnesota (hospital): Education Materials from Nemours Foundation children's health topics for parents, children, and teens.

National Organization for Rare Disorders: Rare disease information

Genetic and Rare Disease Information Center                                                                                                                                                                 

National Institutes of Health   

Centers for Disease Control and Prevention:  Condition fact sheets

Mitochondria disease support and information: MitoAction      

Unique-chromosomal and single dominate genes: Disorder Guides    

Genetic Support Foundation patient library: Commonly tested for prenatal conditions                  

Use the web to find trustworthy resources.

Identify the best types of Internet sites to research your child's condition. In general we recommend looking for .edu, .gov, or .org web addresses over .com or .net addresses.

Access To Credible Genetics Resource Network: Trust it or Trash It?   

How to Find Good Information