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

You are too late for the  2014 Activity Weekend which were a huge success so book soon for the next one!

Next Activity Weekend - 10th to 12th April 2015.

Special 'Earlybird' price IF BOOKED BEFORE 8th August:

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

If booked later 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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2015 Annual Conference & AGM

When: 6th-7th June 2015
Venue: Derby
Cost:   £ t b a


To celebrate our 25th anniversary, the KSA are delighted to announce that Conference 2015 will be bigger and better than ever before!

For the first time the Conference will run for 2 days!!  Following the success of the psychology workshops this year, Saturday will be a dedicated Psychology Day. On Sunday we will hold the AGM and Conference giving everyone more time to talk, listen and learn.  Of course we will still hold the Friday Get-together and, in addition, we can have a super Saturday evening as well.

Watch this space for further details but mark your diary NOW!





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