Working to raise awareness of Klinefelter's Syndrome

and to provide help and advice to all those affected

Helpful Links for KSA Members
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# Web Link Hits
1   Link   Obtaining a Statement of Special Education Need
Obtaining a Statement of Special Education Need
A tough job, but members have found the following of help:

Rathbone Special Education Advice - this website is currently being updated, but their Special Education Advice Line should be able to help on a number of issues. In the past they have offered a range of documents as well as a "pack" to help obtain a statement. Rathbone Special Education Advice
Or Telephone 0800 917 6790
2   Link   Access to Disability Living Allowance
Access to Disability Living Allowance
Cerebra, who support children & young people with brain injuries, have produced an excellent guide to accessing the DLA. There is a short test, or you can download their weightier document (allow a minute or two for it to download).

This is probably one of the best guides that we have seen for this sort of application & with just a little interpretation in a KS context should prove a tremendous help.
3   Link   Help with Childcare
Some parents in the KSA will require childcare within their own home.

Childcare Approval Scheme
As of April 2005 a government scheme was introduced which enabled parents to get some financial support to help pay for their employment costs, when employing an approved nanny.

Employer Supported Childcare Voucher.
Under the childcare approval scheme (April 2006) families may receive financial support by using employer-supported childcare vouchers, which will exempt parents from paying Tax & NIC on the first £55 per week or £243 per month of their childcare costs
4   Link   Living with Disability
This may not apply to most members, but this UK Government set of help-sheets may just have the answer you are looking for: Living with Disability factsheet
5   Link   Valentin APAC
Association for Carriers of Chromosomal Abnormalities.

A French Association established to help, support, meet and facilitate contact between all families confronted by chromosomal abnormalities. The Association works to inform the public and medical professionals about frequent anomalies and insists on the importance of screening for families and prenatal diagnosis to be better informed.

The Association aims to know and recognise the anomalies and their consequences, to improve daily life, to have better treatment, to encourage research and satisfy all the demands highlighted by families. Information and testimonials available in English.

What could I be?

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KSA Activity Weekend 2014

In 2014 we are running TWO Activity Weekends - one 25th to 27th April and the other 19th to 21st September

IF BOOKED BEFORE 14th March for the Spring Event or BEFORE 8th August for the Autumn Event :

Cost: £80 for those with KS or under 19, £135 for other Members, £310 for Non-Members.

If booked after these dates the the costs rise to £90, £145 and £350 respectively

Please book early as the weekends fill up fast!!

 There is more information about Activity Weekends under the Read more.... link below.
 Contact me as soon as possible if you want further information or wish to book a place by phone on 01629 534402 or


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2014 Annual Conference & AGM

When: 2014 28th June .
Venue: Brighton.
Cost: Early Bird £20.00 each

Friday night pre-conference get-together: The Regency Restaurant, 131 King's Road, Brighton, BN1 2HH


Hotel Accommodation information will be sent out to Members in the next few weeks and be included in the Spring Newsletter




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