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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.



Genetic Alliance UK
Unit 4D Leroy House
London, N1 3QP United Kingdom



Email Address

[email protected]


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.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.