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 conta[email protected]
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 [email protected].
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.
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 [email protected].
WHAT HAPPENS IF MY CHILD GETS A DIAGNOSIS, DO I HAVE TO LEAVE SWAN UK?2018-07-23T12:47:31+01:00
We recognise that getting a diagnosis can be a very stressful and emotional time for families and they often need our continued support to make sense of the diagnosis. We will work with families to identify their needs and see how these can best be met – sometimes this will involve signposting them, if relevant, but often the diagnosis is very rare and no other support exists so for now they remain part of our community. We never ask anyone to leave and will continue providing support as long as the family feels they need it.
As a result of genetic sequencing, more children are being diagnosed with very rare conditions, such as single-gene disorders where they may be one of only a few cases known worldwide. We have a specific forum for members whose children have been diagnosed called our ‘graduates group’ where they can discuss issues resulting from their new diagnosis and we are working with them as a group to identify the support they require.
MY CHILD HAS A DIAGNOSED RARE DISEASE/CONDITION, CAN I JOIN SWAN UK?2018-07-23T12:47:03+01:00
The aim of SWAN UK is to support families who are affected by undiagnosed genetic conditions. Within our community we also have some members whose children have been diagnosed with a very rare genetic condition for which no other support exists. Some families join our community after receiving a very rare diagnosis from genetic sequencing.
If your child has a diagnosed rare disease or genetic condition for which an established support group already exists, you will not be able to join SWAN UK.
DOES SWAN UK SUPPORT FAMILIES OF ADULTS AFFECTED BY A SYNDROME WITHOUT A NAME?2018-07-23T12:46:39+01:00
At present we are only funded to support families of children and young adults aged 0–25. However, if you are the parent of an adult affected by a syndrome without a name who needs support please get in touch and we will see how we can help.
I’m a professional, can I join SWAN UK?econochie2018-11-27T14:49:30+00:00
Membership of SWAN UK is only open to parents of children or young adults affected by a syndrome without a name. However, you can keep up-to-date with SWAN UK news by joining our mailing list. If you would like us to come and give a talk to your team or organisation or you would like us to send you some resources please email [email protected].