SWAN UK (syndromes without a name)
Registration Form
Please complete as much of the form as you can/applies to your family, continuing on a separate
sheet of paper if necessary. 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. Please return a signed copy to: SWAN UK, Genetic Alliance UK, Level 3
Barclay House, 37 Queen Square, London WC1N 3BH or scan/take photos of each page and email to
[email protected]
SWAN UK Parent Representatives
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.
About You
* Please consider registering all parents/family members who have caring responsibilities or
significant involvement in your child's life such as parents, grandparents, aunts/uncles and adultage siblings – anyone who may benefit from the support SWAN UK can offer. Providing this
information helps us to improve our service to you, and helps us with funding applications.
Parent/Carer One
Parent/Carer Two* (if applicable)
Name
Name
Title (eg Mr, Mrs, Miss, Dr)
Title (eg Mr, Mrs, Miss, Dr)
Family role (eg mother, father)
Family role (eg mother, father)
Address
Address (leave blank if the same)
County
County
SWAN UK is a support network
run by Genetic Alliance UK
Registered charity numbers:
1114195 and SC039299
Registered company number:
05772999
Postcode
Postcode
Home phone
Home phone
Mobile phone
Mobile phone
Twitter name
Twitter name
Facebook name
Facebook name
Email address
Email address
If you wish to join our Facebook group and
your Facebook email address is different
from the one above, please enter it here
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. of children with
an undiagnosed genetic
condition
Does your child receive Disability
Living Allowance (DLA)? Please tick
Yes
No
Haven’t heard of this
Haven’t applied
How did you hear about SWAN UK: please tick
Facebook
Information Event (If so, please state which)
Internet search
Twitter
Family/Friend
Genetic Alliance UK
Geneticist
Paediatrician
SWAN UK (syndromes without a name)
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SWAN UK member
SWAN UK promotional material
Other (please state)
About Your Undiagnosed Children
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 Impairment
Developmental Delay
Epilepsy
Global Developmental Delay
Hearing Impairment
Hypermobility
Hypertonia (tight/ stiff muscle
tone)
Hypotonia (low muscle tone)
Mild/moderate
Learning
Difficulties
Severe Learning Difficulties
Non-verbal
Physically Disabled
Tube-fed
Visual Impairment
SWAN UK (syndromes without a name)
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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
Child One
Child Two
Child
Three
Child Four
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?
Genetic tests
Genome sequencing
Array test
Electroencephalography (EEG)
Magnetic resonance imaging
(MRI)
Lumbar puncture
Angelman
Fragile X
Rett syndrome
About Your Other Children
Child One
Child Two
Name
Date of birth
Gender (Male, Female, Other)
Any known diagnosis/
condition?
SWAN UK (syndromes without a name)
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Monitoring Information
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.
Parent/Carer 1
Parent/Carer 2
Do you consider yourself to have a disability?
Yes
No
Prefer not to say
How would you describe your marital status?
Single
Married
Separated
Divorced
Widowed
Cohabiting/civil union
Other
Prefer not to say
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 religion, if any?
SWAN UK (syndromes without a name)
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Parent/Carer 1
Parent/Carer 2
How would you describe your ethnic background?
WHITE
British
Irish
Any other white background
MIXED
White and Black Caribbean
White and Black Africa
White and Black British
White and Asian
Any other mixed background
ASIAN OR BRITISH ASIAN
Indian
Pakistani
Bangladeshi
Any other Asian background
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 __________
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.
OFFICE USE ONLY:
Received:
Database:
Pack Sent:
SWAN UK (syndromes without a name)
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