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.
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.
A Child's Rare and Undiagnosed Illness: A Mother's Journey
ARTICLESTo the Parents Still Waiting for a Diagnosis for Their Child
Learning 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
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
Autism Spectrum and developmental delays "Is Something Wrong with My Child?" Expert Advice from Dr. Ellenmorris Tiegerman re getting a diagnosis.
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