Syndromes Without A Name USA (SWAN USA) is a non-profit tax exempt organization that offers support, information, and advice to families of children living with a syndrome without a name. SWAN also has organizations in other countries, too.
Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program (UDP) pursues two goals. It strives to provide answers to patients with mysterious conditions that have long eluded diagnosis, and it is committed to advance medical knowledge about rare and common diseases.
In Need of Diagnosis (INOD) provides help and support to individuals with undiagnosed conditions.