SWAN UK

The SWAN (Syndromes With a Name) UK is a non-profit, self-help organization, a registered charity, promotes awareness of challenges faced by children and families affected by undiagnosed diseases. It campaigns for equal rights and recognition, is building a database to help with future research, links families to others when possible, and facilitates the exchange of information and stories through its newsletter. Knowing that something is wrong with their child but lacking a diagnosis leaves parents in the difficult position of knowing that their child is different from others but not knowing why or what to do about it. The search for a diagnosis can be anguishing for both children and parents.