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Resources

Syndromes Without a Name (SWAN USA)

Syndromes Without A Name USA (SWAN USA) offers support, information and advice to families of children living with a syndrome without a name. They are often described in many different ways such as; undiagnosed syndrome, unknown diagnosis, mystery diagnosis. They also advocate for changes in the medical community that will benefit undiagnosed individuals.

Undiagnosed Diseases Network

The Undiagnosed Diseases Network (UDN) unites leading clinical and research experts across the country to solve the most challenging medical mysteries. Patients with longstanding unexplained symptoms receive in-depth evaluation, including genetic testing, at one of the UDN’s seven medical centers.

Altogether the nationwide team includes more than 100 cutting-edge researchers whose collective goal is to find the cause of each patient’s disorder. 

Applications for all seven centers are being processed by the online UDN Gateway.