Privacy Policy

Who we are:

We are the Klinefelter’s Syndrome Association (KSA) and our registered address is:

Engineers Cottage, Homesford, Matlock, Derbys., DE4 5HJ

We can also be contacted through our helpline 0300 111 47 48 or via the Contact Form available on our website.

What information (data) we collect from people who contact us:

  • We do not specifically collect any personal details from people who contact us via our Helpline. However, if they wish to provide personal data, these are keep only as long as the person is engaged in a dialogue contact with the KSA.
  • People who contact us via our website must provide an email address. They may also choose to provide other personal data. All data is kept only as long as the person is engaged in a dialogue with the KSA.

What information (data) we collect from members – and why:

  • Data held –  Purpose
  • Name of member – for Identification
  • Address of member  – for Contact purposes
  • Telephone number(s) of member – for Contact purposes
  • Email address of member – for Contact purposes
  • If Gift Aid can be claimed – Requirement of the HMRC
  • Date of joining the KSA –  For historical interest
  • Membership fees payment information  – For payment identification
  • Name of person with KS/XXY –  Identification
  • Date of birth of person with KS/XXY  – Identify people of similar ages
  • Karyotype of person with KS/XXY –  Karyotype specific research or events
  • Relationship of member to person with KS  – Facilitate  contacts and planning of appropriate events

What legal basis do we have for collecting and using this data?

Our legal basis for collecting this information is ‘Legitimate Purpose’ because we are using your data in ways which you would reasonably expect as a member of the KSA i.e. to give you information and support.

We believe that this will have a minimal impact on your privacy.

What we use your data for:

The KSA will use your contact details to send you:
• The KSA Newsletter,
• Information about KSA organised events such as the Conference, Activity Weekends
• Information about externally organised events of interest to those affected by KS/XXY e.g. social events, conferences with KS/XXY related content
• Information about fund-raising events which benefit the KSA
• Information of specific interest

We ask for a karyotype for possible research purposes and to match people with the same karyotype for support.


Personal data will not be disclosed to any third party without express consent except as explained under ‘sharing member data’.

Keeping your data safe:

All data will be stored safely, in accordance with the General Data Protection Regulation (GDPR) 2018.

Sharing member data

To send out KSA mailings and Newsletter, the KSA uses data processors. These comply with the requirements of the GDPR and have access only to data which is relevant to their purpose.
We will never sell or rent your information to third party organisations.

How long do we keep member data?

If you discontinue your membership, we are required to keep Gift Aid information for up to 6 years. This includes your title, name, first line of your address and postcode.

We will keep your data indefinitely for possible research purposes in the future.

Of course, when your membership ends, you can request that all your data is deleted (except what is required for Gift Aid).

You have the right:

• to ask what data we hold relating to you. A copy of the information will normally be provided free of charge, without delay – at the latest, within one month of us receiving your request.
• to object to us holding or processing your data

Any requests should be sent to or in writing to our registered address above.

If you feel that the KSA has not responded appropriately to any concerns which you raise, you may take your complaint to the Charity Commission.

How we will contact you:

Our preferred method of communication is email but occasionally we may also phone you if more appropriate.

As any information we send you is for your benefit, it is not classed as marketing and your consent is implicit. However, if you prefer not to be contacted by either email or phone, please let us know by emailing: or on the Helpline: 0300 111 4748 option 3.


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This policy was updated in October 2021.