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. 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
Please ensure you read the Your Data section on page 6 and tick the ‘Yes’ box in order to complete your registration, join our online forums, and receive further information from us.
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 adult-age 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 / NameTitle (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
Postcode / Postcode
Home phone / Home phone
Mobile phone / Mobile phone
Twitter name / Twitter name
Facebook name / Facebook name
Email address / Email address
Facebook email address (if different) / Facebook email address (if different)
Total no. of children in family / Total no. of children with an undiagnosed genetic condition / Does your child receive Disability Living Allowance (DLA) or PIP (Personal Independence Payments)? Please tick
Yes
No
Haven’t heard of it
Haven’t applied
How did you hear about
SWAN? UK: Tick all that apply
Facebook / GeneticistInformation Event (state which) / Paediatrician
Internet search / SWAN UK member
Twitter / SWAN UK material promotional material
Family/Friend / Other (please state)
Genetic Alliance UK
About Your Undiagnosed Children
Supporting evidence is required to show that your child has an undiagnosed genetic condition. Please tick the appropriate box to confirm what type of evidence you are sending us. We cannot accept Disability Living Allowance documentation as this does not outline the nature of your child’s condition. If you have difficulty in providing evidence then please contact us as we may still be able to help.
/Child One
/Child Two
/Child Three
/Child Four
Confirmation of your child’s participation in a research project (eg DDD or 100,000 Genomes Project)Letter showing your child’s appointment with a genetic healthcare professional
Letter showing your child has had or will have genetic testing of any kind
Letter stating that your child has global development delay or failure to thrive
Letter from your GP stating that your child is suspected to have a genetic condition but that it is currently undiagnosed
About Your Undiagnosed Children contd
Please tick all the following boxes that apply to your undiagnosed child/ren – if you have other children, please enter their details on page 4.
Child One
/Child Two
/Child Three
/Child Four
NameDate 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
Is your child taking part in any research studies:
100,000 Genomes Project
DDD
Other
Is there any other information you wish to tell us about your undiagnosed child/ren?
Please continue on a separate sheet if necessary
About Your Other Children
Child One
/Child Two
/Child Three
/Child Four
NameDate of birth
Gender (Male, Female, Other)
Any known diagnosis/ condition?
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 for each Parent/Carer listed on page 1.
Parent/Carer 1 / Parent/Carer 2Do you consider yourself to have a disability?
Yes (You do not need to give details)
No
Prefer not to say / Do you consider yourself to have a disability?
Yes (You do not need to give details)
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 marital status?
Single
Married
Separated
Divorced
Widowed
Cohabiting/civil union
Other
Prefer not to say
Do you consider yourself to live in a rural area?
Yes
No
Prefer not to say / Do you consider yourself to live in a rural area?
Yes
No
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 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? / How would you describe your religion, if any?
How would you describe your ethnic background?
WHITE
1 English/Welsh /N. Irish/ Scottish/ British
2 Irish
3 Gypsy or Irish Traveller
4 Any other white background
/ How would you describe your ethnic background?WHITE
1 English/Welsh/ /N. Irish/ Scottish/ British
2 Irish
3 Gypsy or Irish Traveller
4 Any other white background
MIXED/MULTIPLE ETHNIC GROUPS5 White and Black Caribbean
6 White and Black African
7 White and Asian
8 Any other mixed background
/ MIXED/MULTIPLE ETHNIC GROUPS5 White and Black Caribbean
6 White and Black African
7 White and Asian
8 Any other mixed background
ASIAN/ASIAN BRITISH9 Indian
10 Pakistani
11 Bangladeshi
12 Chinese
13 Any other Asian background
/ ASIAN/ASIAN BRITISH9 Indian
10 Pakistani
11 Bangladeshi
12 Chinese
13 Any other Asian background
BLACK/AFRICAN/CARIBBEAN/BLACK BRITISH14 African
15 Caribbean
16 Any other Black/African/Caribbean background
/ BLACK/AFRICAN/CARIBBEAN/BLACK BRITISH14 African
15 Caribbean
16 Any other Black/African/Caribbean background
OTHER ETHNIC GROUP17 Arab
18 Any other ethnic group / OTHER ETHNIC GROUP
17 Arab
18 Any other ethnic group
Prefer not to say / Prefer not to say
Your data
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 accordance with the Data Protection Act and the new General Data Protection Act with effect from 25 May 2018, SWAN UK, a support network run by the charity Genetic Alliance UK, would like to use your details to keep you informed about our work and send you further information. Our use of your contact data includes, but is not limited to, sending invitations by email to join our private online forums, sending a Welcome Pack, sending regular newsletters and sending information about family events. Please tick ‘Yes’ if you agree to this and ‘No’ if you do not. If you do not tick ‘Yes’ please note we cannot contact you further about your SWAN UK membership.
Some geographical areas have a SWAN UK Local Parent Rep, who are volunteers bound by the same confidentiality and equal opportunities policies as all SWAN UK staff. If a SWAN UK Parent Rep exists in your area we will automatically share your name and 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.
I agree to the information on this form being held by SWAN UK and I agree that I can be contacted as outlined above:
Yes
No
Signed (Parent 1) ______Name ______Date ______
Signed (Parent 2) ______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:
Mship code: Website
Received:
Database/Pack sent:
SWAN UK (syndromes without a name) Oct 17 / Page 2