What we do

Through our website and helpline, we provide information and support for all affected by KS/XXY including families, medical professionals, teachers and anyone else who comes into contact with people diagnosed with KS/XXY.

Early diagnosis and a good understanding of the effects of KS/XXY can make a real difference. Therefore, the KSA works to raise the profile of the condition, particularly within the medical profession. It is important that people understand the possible implications of KS/XXY, not only for the individual affected, but also for all those with whom they have contact during their lives.

The KSA works to raise awareness and provide support by:

  • hosting an annual Conference in June and a mini-conference in September
  • organising an Activity Weekend at least annually
  • promoting informal social events throughout the year
  • distributing a  Members’ e-Newsletter  at least 3 times each year.
  • providing a Helpline (0300 111 4748)
  • producing literature
  • exhibiting at medical conferences
  • promoting research
  • providing links to several secret Facebook groups
  •  planning a chat forum in the near future – so watch this space!

Many of these activities cost money – the website has hosting fees and security costs, the Helpline has a monthly cost, exhibiting at conferences is very expensive because we have to pay for a stand, hotel costs for the people who attend plus public liability insurance. Booklets involve printing costs. There are also costs associated with running the charity although these are kept to a minimum because we have no paid workers or an office.

We depend on heavily on donations and membership fees to fund the KSA, so do please consider joining and becoming part of our community.