OFFICE USE
ONLY:
Local Network area:
Received:
Database:
Pack Sent:
Please return a signed copy to:
SWAN UK, Unit 4D Leroy House, 436 Essex Road, Islington, N1 3QP
Alternatively you can scan or take photos of each page and email to info@undiagnosed.org.uk
Some areas have SWAN UK Local Parent Representatives who are volunteers bound by the same confidentiality and equal opportunities policies as all SWAN UK staff. If a SWAN UK Parent Representative exists in your area we will automatically share your email address with them so they can make contact to invite you to local events. We will not share your contact details with other members without your permission. SWAN UK will never give out your home address or phone number to other members.
The information given on this form will be held according to, and will be subject to, the provisions of the Data Protection
Act 1998. SWAN UK will not share your details without your permission.
In an effort to keep down costs, all correspondence from SWAN UK is via email. If you require hard copies sent through the post please let us know by ticking this box.
Name
Title (eg Mr, Mrs, Miss, Dr)
Family role (eg mother, father)
Address
County
Postcode
Email address
Name
Title (eg Mr, Mrs, Miss, Dr)
Family role (eg mother, father)
Address (leave blank if the same)
County
Postcode
Email address
Page 1 of 5

Home phone
Mobile phone
Twitter name
Facebook name
If you wish to join our Facebook group and your
Facebook email address is different from the one above, please enter it here
Home phone
Mobile phone
Twitter name
Facebook name
If you wish to join our Facebook group and your
Facebook email address is different from the one above, please enter it here
Total no. of children in family Total no. children with an undiagnosed genetic condition
Does your child receive Disability Living
Allowance (DLA)?
Yes
No
Haven’t heard of this
Haven’t applied
Facebook
Information Event (If so, please specify which one)
Internet search
Twitter
Family/Friend
Genetic Alliance UK
Geneticist
Paediatrician
SWAN UK member
SWAN UK promotional material
Other
Please tick all the boxes that apply to your child
Child One Child Two Child Three Child Four
Name
Date of Birth
Gender (Male, Female, Other)
Does your child have any of the following symptoms?
Cardiac Impaired
Developmental Delay
Epilepsy
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Global Developmental Delay
Hearing Impaired
Hypermobility
Hypertonia (tight or stiff muscle tone)
Hypotonia (low muscle tone)
Mild/moderate Learning Difficulties
Severe Learning Difficulties
Non-verbal
Physically Disabled
Tube-fed
Visually Impaired
Any other information you wish to tell us about your undiagnosed child/ren?
Please continue on a separate sheet if necessary.
Child One Child Two Child Three Child Four
Is your child taking part in any research studies:
100k
DDD
Other
Has your child had any of the following tests?
Child One Child Two Child Three Child Four
Genetic tests
Genome sequencing
Array test
Electroencephalography (EEG)
Magnetic resonance imaging (MRI)
Lumbar puncture
Angelman
Fragile X
Rett syndrome
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Child One
Name
Date of birth
Gender (Male, Female, Other)
Any known diagnosis or condition?
Child Two Child Three Child Four
This information is confidential and helps us to apply for grants / further funding to extend the support offered by SWAN UK. Please tick as appropriate.
Do you consider yourself to have a disability?
Yes
Parent 1 Parent 2
No
Prefer not to say
Please enter your religion, if any
How would you describe your marital status?
Single
Married
Separated
Divorced
Widowed
Cohabiting / civil union
Other
Prefer not to say
Parent 1
Parent 1
Parent 2
Parent 2
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How would you describe your employment status?
Employed full-time
Employed part-time
Self-employed
Unemployed
Full-time carer
Studying
Other
Prefer not to say
How would you describe your ethnic background?
WHITE
British
Irish
Any other white background
MIXED
White and Black Caribbean
White and Black African
White and Black British
White and Asian
Any other mixed background
ASIAN OR BRITISH ASIAN
Indian
Pakistani
Bangladeshi
Any other Asian background
Parent 1
Parent 1
Parent 2
Parent 2
BLACK OR BRITISH
Caribbean
African
Any other black background
OTHER ETHNIC GROUPS
Chinese
Any other ethnic group
Prefer not to say
I agree to the above information being held by SWAN UK.
Signed ___________________________ Name _______________________________ Date __________
Page 5 of 5