Conditions & syndromes · England
When you do not have a diagnosis
Your browser or device provides the reading voice.
A diagnosis is a name or explanation for a health condition.
Sometimes people do not have an answer yet.
SWAN means Syndromes Without A Name.
It is not one particular disease.
Talk to your doctor about your concerns.
Ask whether more tests would help.
Ask what a test can tell you.
You can ask for help to understand your choices.
A test may not find an answer.
Sometimes the result is unclear.
Ask your health team to explain it.
You can ask for help while waiting for answers.
Explain what you need help with each day.
Services have different rules about who they can help.
Keep a short record of what has changed.
Take useful information to appointments.
Ask who will organise your next review.
Tell the health team about new problems.
SWAN UK connects families with similar experiences.
It supports families of children and young adults up to 25.
Joining is free.
Contact can help families with an undiagnosed disabled child.
Genetic Alliance UK also has information for adults.
What you can do next
Ask what support is available while you seek answers.
Choose someone you trust to help, if you want.
Find out about SWAN UK Web pageThis link opens another website.
It may use harder words.
More useful links
- SWAN UK family community Web page
Read about joining and the current age range for family support.
- Seeking a diagnosis as an adult Web page
Information for adults in England.
- Contact: help without a diagnosis Web page
Information and support for families with an undiagnosed child.
- NHS: understanding genetic tests Web page
Information about genetic testing.
These links open other websites.
They may use harder words.
SWAN: living without a diagnosis
Understanding an undiagnosed condition, asking about tests and finding support while seeking answers.
Children and adults · England · SWAN UK family support has an age limit
What SWAN means
SWAN stands for Syndromes Without A Name. It is used when a genetic condition is suspected but its cause has not been identified. It is not the name of one disease. People described as having a SWAN can have very different health, learning, movement and communication needs.
Why there may be no answer yet
Some genetic changes are not detected by the tests used. Others have not been described or understood well enough to explain someone's condition. A person may have a description such as global developmental delay without knowing the underlying cause. Not everyone will receive a genetic diagnosis, even after several tests.
Talk about testing and your choices
Discuss concerns with your GP or specialist. Ask whether a genetics referral could help. Before testing, ask about its purpose, limits and implications for relatives. A genetic counsellor can explain your choices. Healthcare continues if you decide against genetic testing.
Understand an uncertain result
A test may find no explanation or identify a change whose meaning is unclear. This may be called a variant of uncertain significance, or VUS. An uncertain finding does not confirm the cause. Ask whether the result changes your care or needs future review.
Ask for help with needs now
Describe what is difficult in daily life and what support would help. You can ask about healthcare, therapies, learning support or a social care assessment while seeking answers. A named genetic diagnosis is not the only evidence of need. Access depends on the service's assessment and eligibility rules, rather than automatic entitlement.
Prepare for appointments and follow-up
Record symptoms, when they happen and how they affect daily life. Bring useful reports and communication information. Agree who coordinates care, when reviews are expected and who to contact about changes. Ask about new symptoms while seeking a genetic answer.
What SWAN UK offers
SWAN UK is part of Genetic Alliance UK. Its free community supports families of children and young adults up to 25 with undiagnosed genetic conditions. Families still awaiting tests or with uncertain results can ask about joining. The community offers information and contact with other families.
Support for families and adults
Contact offers information and advice to families with an undiagnosed disabled child. Its Listening Ear service provides practical and emotional support for parents and carers. Adults seeking answers can use Genetic Alliance UK's adult diagnosis guide. Tell your care team if uncertainty is affecting your wellbeing, and ask what support is available.
Words you could use
“We do not yet have an explanation. What support can address the needs now, and who will arrange the next review?”
More useful links
- SWAN UK family community Web page
Read about joining and the current age range for family support.
- Seeking a diagnosis as an adult Web page
Information for adults in England.
- Contact: help without a diagnosis Web page
Information and support for families with an undiagnosed child.
- NHS: understanding genetic tests Web page
Information about genetic testing.
These links open other websites.
They may use harder words.
Where the information comes from
Links checked 9 November 2026.
These links open other websites.
They may use harder words.
- Genetic Alliance UK: SWAN UK Web page
Meaning of SWAN, free community membership and current family-support remit up to age 25.
- Genetic Alliance UK: genetic, rare and undiagnosed conditions Web page
Reasons a genetic cause may remain unknown, uncertain variants and individual differences.
- NHS: genetic and genomic testing Web page
Testing choices and results.
- Genetic Alliance UK: seeking a rare diagnosis as an adult Web page
Appointments and needs-led support.
- Contact: undiagnosed children Web page
Information, advice and emotional support for families of undiagnosed disabled children.