Undiagnosed Child
This is very sad - to know there is something wrong with your child but to live everyday with not knowing what it is. It may help to know that you
are not alone. There are many others searching for information that will help them understand their child's symptoms. You can connect with them through the forums below.
Forums and Support Groups
Undiagnosed Brain Diseases: meet, discuss with other patients or families living with Undiagnosed Brain Diseases at Rare Connect.
Facebook: Syndromes Without A Name
Helpful Links
Living without a diagnosis PDF
SWAN USA Syndromes Without A Name Undiagnosed Disease Program, Launched by National Institute of Health, Researching undiagnosed conditions in children. Syndromes Without A Name (SWAN) UK A supportive organization for families of children who have undiagnosed, unnamed conditions, or who are still looking for a diagnosis.
VIDEOS
A Child's Rare and Undiagnosed Illness: A Mother's Journey
Our Children, and the unknown phantoms
ARTICLES
To the Parents Still Waiting for a Diagnosis for Their ChildLearning About an Undiagnosed Condition in a Child from National Human Genome Research Institute
Agonizing Journey: The Undiagnosed Child with suggestions for parents in this predicament by a mother.
Lead Poisoning – the undiagnosed epidemic Why aren't more lead ... from The journal of The LEAD (Lead Education and Abatement Design) Group Inc
Help with undiagnosed disability
Letters to Cal - a mother's blog about her son who was undiagnosed when he passed away and her fight to do something about undiagnosis.
Facebook Causes site called Project Considering All Lives
In Loving Memory of Simra who died with an undiagnosed genetic disorder.
Primary Care Docs Often Overlook Short Stature in Girls
Rare and Undiagnosed Diseases: Where Pediatricians Can Go for Reliable Information and Resources
SPECIFIC CONDITIONS
Autism Spectrum and developmental delays "Is Something Wrong with My Child?" Expert Advice from Dr. Ellenmorris Tiegerman re getting a diagnosis.
Ataxia-telangiectasia is a rare, childhood neurological disorder delayed development of motor skills, poor balance, and slurred speech, usually occur in first decade of life. Gene Found
BridgeMar Syndrome - A novel infantile spinal muscular atrophy phenotype with additional features including small head size at birth. The University of Utah • Pediatric Motor Disorders Research Program
What can you do if you are undiagnosed? Help with pain. Undiagnosed children. Personal stories. List of diseases considered difficult to diagnose. Support forums for the undiagnosed.
