General Enquiries

We want to hear from you!

Maybe you have story you’d like to share, want to let us know about some press or fundraising you are doing or would like us to come and give a talk. Please get in touch.

Don’t forget to check out our FAQs at the bottom of the page. If you can’t find the answer to your question, please contact us by filling in the form below or emailing

Did you know you can join our mailing list too?


Genetic Alliance UK,
Creative Works
7 Blackhorse Lane
E17 6DS


0300 124 0441



Other enquiries


With our colleagues in the Genetic Alliance UK policy team, we want to make sure that voices of SWAN UK families are heard by policy makers across the UK. If you would like to raise a policy issue with our team, or to ask us any questions, please get in contact at


Membership of SWAN UK is free to any parent of a child or young adult affected by a syndrome without a name living in the UK. Membership of SWAN UK is free for any family in the UK with a child or young adult (0-25) affected by a syndrome without a name.

Find out more about joining us


Our research team specialises in studying the experiences of patients and families affected by genetic conditions, including undiagnosed conditions. If you would like to contact us to ask about a research project, or have other questions about research, then please contact us at


Our Big Ambition here at SWAN UK is that all families of children and young adults affected by a syndrome without a name have the support they need, when they need it. You can help us achieve this ambition by fundraising for us. We’d love to hear from you! Visit our Get Involved page to find out more about how you can support us or email