International Support Forums for 47XXY, including Klinefelter Syndrome & variants

Current Quote
"Being 47xxy we meet the Intersex definition described by UN Human Rights:

"Intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Intersex is an umbrella term used to describe a wide range of natural bodily variations".

We don't have to use the word 'intersex' or the more recent term 'Variations of Sex Characteristics - VSC' but can still label ourselves by our gender or our own preference. However where there are laws protecting people with VSC we do need to know that 47xxy is included in such protections."
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XXYTalk International Forums

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EU GDPR Privacy Statement
Posted on: 05-26-18 05:28 AM     Posted by: Paul

Privacy Policy
Last updated: 25 May 2018

The European Union’s General Data Protection Regulation (GDPR) takes effect 25 May. Because Xxytalk (KSA UK) processes the personal data of our European members, we’re obligated to comply with this new data privacy law.

What is the General Data Protection Regulation?

GDPR is a new European Union law that strengthens data protection rules for EU residents. The law applies to all EU but also to foreign organisations, that offer services to EU residents. The law takes effect 25 May and replaces the EU’s 1995 Data Protection Directive.

What does Xxytalk (KSA UK) do to protect personal data?
Long before GDPR, Xxytalk (KSA UK)’s policies took care to protect your information. Our Privacy Policy explains what information we collect, how we collect it and how we use it. The measures we take to safeguard your personal data include using password-protected databases on secure servers behind firewalls.
Xxytalk (KSA UK) recognises that your privacy is very important and we take it seriously. This privacy policy (“Privacy Policy”) describes our policies and procedures about the collection, use, disclosure, and sharing of your personal information or personal data when you use the Xxytalk (KSA UK) Platform. Xxytalk (KSA UK) is the data controller for your personal information collected through the Xxytalk (KSA UK) Platform. This Privacy Policy applies to activities by Xxytalk (KSA UK), described in this notice as “we” or “us”). For clarity, personal information or personal data means information relating to an identified or identifiable natural person.

The Information We Collect
We collect information directly from individuals, through the Xxytalk (KSA UK) Platform. If you choose not to disclose certain personal information, it may limit your access to certain services or features, including account registration, and the ability to interact with other Xxytalk users.

Account and Profile Information: When you create an account and profile on the Xxytalk (KSA UK) Platform, we collect your name, contact information, and other information you provide, such as topics that you know about or find interesting. Your name, photo, and any other information that you choose to add to your public-facing profile will be available for viewing to users of the Xxytalk (KSA UK) Platform.

Once you create a profile, other users will be able to see in your profile certain information about your activity on the Xxytalk (KSA UK) Platform, such as the questions and answers you post, as well as topics of interest to you.

Your Content, date and time stamps, and all associated comments are viewable to other members on the Xxytalk (KSA UK) Platform, along with your name.

Communications: When you communicate with us (via email or through the Xxytalk (KSA UK) Platform), we may maintain a record of your communication.

Automatically Collected Information About Your Activity
We automatically collect limited information about your activities, such as date and time of your visit, and other information about your use of the Xxytalk (KSA UK) Platform.

We also collect and may store information that your computer or mobile device provides to us in connection with your use of the Xxytalk (KSA UK) Platform such as your browser type, type of computer or mobile device, browser language, IP address, mobile carrier, unique device identifier, location.

We also receive information when you view content on or otherwise interact with the Xxytalk (KSA UK) Platform.
We collect browsing information – such as IP address and location, date and time stamp, and other information about user activities on the Xxytalk (KSA UK) Platform,

Purposes and Legal Basis for Our Using of Your Information
We do not sell your personal data – such as your name and contact information – to third parties to use for their own marketing purposes.
Xxytalk (KSA UK) uses the information we collect for our legitimate interests which include the following:

Provide our Services.
To provide you the services we offer on the Xxytalk (KSA UK) Platform, communicate with you about your use of the Xxytalk (KSA UK) Platform, respond to your inquiries, provide troubleshooting, and for other customer service purposes.

Membership purposes.
For membership purposes, such as to send you news that you may find of interest such as site changes or meet up information.

To gather metrics to better understand how users access and use the Xxytalk (KSA UK) Platform; to evaluate and improve the Xxytalk (KSA UK) Platform and to develop new products and services.

Comply with Law.
To comply with legal obligations, as part of our general administration.

Prevent Misuse.
Where we believe necessary to investigate, prevent or take action regarding illegal activities, suspected fraud, situations involving potential threats to the safety of any person or violations of our Terms of Service or this Privacy Policy.

How We Share Your Information
We share information as set out below:

Service Providers We may share your information with third party service providers who use this information to perform services for us, such as hosting providers, auditors, advisors, consultants, customer service and support providers, as well as KSA UK National Executive Committee who govern use of xxytalk.

Legally Required
We may disclose your information if we are required to do so by law.

Protection of Rights We may disclose information where we believe it necessary to respond to claims asserted against us or, comply with legal process (e.g., subpoenas or warrants), enforce or administer our agreements and terms, for fraud prevention, risk assessment, investigation, and protect the rights, property or safety of Xxytalk (KSA UK), its users, or others.

Your Content and Activity
Your Content, including your name, profile picture, profile information, and certain associated activity information is available to other users of the Xxytalk (KSA UK) Platform.

Tracking We and our third party hosting providers use JavaScript, local storage, log files, and other mechanisms to automatically collect and record information about your usage and browsing activities on the Xxytalk (KSA UK) Platform online services. We do not allow advertising and we do not share IP addresses or personal information with third parties other than hosting providers.

The security of your information is important to us. Xxytalk (KSA UK) has implemented safeguards to protect the information we collect. However, no website or Internet transmission is completely secure. We urge you to take steps to keep your personal information safe, such as choosing a strong password and keeping it private, as well as logging out of your user account, and closing your web browser when finished using the Xxytalk (KSA UK) Platform on a shared, or unsecured, device.

Access and Amend Your Information
You may update or correct your account information at any time by logging in to your account. You may also make a number of other adjustments to settings or the display of information about you.

Your Content

You may request deletion or amendment of the content that you post at any time by either creating a Private Topic for an Administrator or by emailing admin@xxytalk.com. Any content you have posted may remain on the Xxytalk (KSA UK) Platform and be commented on by other members, Moderators and Administrators.

If you have registered with us and wish to access or update your profile, you may do so online by visiting the “my xxytalk” settings in your account.

You may also contact admin@xxytalk.com to access or amend your personal information, to request that we rectify, delete or stop processing your personal information, to withdraw your consent to our processing, and, if you are an EEA resident, to exercise your opt-out rights.

Requests should be directed to admin@xxytalk.com

Please keep in mind that certain services will not be available if you withdraw your consent, or otherwise delete or object to our processing of certain personal information. We will respond to your request in accordance with applicable law, but the likely outcome is that your membership of the site will become untenable.

You also have the right to lodge a complaint via chair@ksa-uk.net.

Retention of Your Data
We will generally retain your profile and related personal information for as long as you have an account with us. If you wish to “be forgotten” by Xxytalk (KSA UK) (i.e., request the deletion of your personal information from Xxytalk (KSA UK) and the Xxytalk (KSA UK) Platform), you will need to submit your request by email to admin@xxytalk.com.

If you request deletion of your account then, to the extent permitted by applicable law, we will retain and use your personal information as necessary to comply with our legal obligations, resolve disputes, maintain appropriate business records, and enforce our agreements. Further, any questions you post, threads you start, or other content that other users have responded to or interacted with may continue to appear in the Xxytalk (KSA UK) Platform, but your user name will be removed from such content appearing as ‘former member’.

Transferring Your Data
Xxytalk (KSA UK) is headquartered in the United Kingdom, being part of UK Charity, The Klinefelter’s Syndrome Association (www.ksa-uk.net).

The Platform relies on entities and service providers in the United Kingdom and the United States and throughout the world.

As such, we and our service providers may transfer your personal information to, or access it in, jurisdictions (including the United Kingdom and the United States) that may not provide equivalent levels of data protection as your home jurisdiction. We will take steps to ensure that your personal information receives an adequate level of protection in the jurisdictions in which we process it.

Childrenʼs Privacy

You must be 16 years of age or older to register on the Xxytalk platform in compliance with the Children's Online Privacy Protection Act (COPPA).
We do not knowingly collect or solicit personal information from anyone under the age of 16, or knowingly allow such persons to register.

If we become aware that we have collected personal information from a child under the relevant age without parental consent, we take steps to delete that information.

Links to Other Websites
The Xxytalk (KSA UK) Platform may contain links to third-party sites, or online services. We are not responsible for the practices of such third parties, whose information practices are subject to their own policies and procedures, not to this Privacy Policy.

Contact Us
If you have any questions about our practices or this Privacy Policy, please contact us at admin@xxytalk.com ,

Changes to Our Privacy Policy

If we change our privacy policies and procedures, we will post those changes on this page. If we make any changes to this Privacy Policy that materially change how we treat your personal information, we will endeavour to provide you with reasonable notice of such changes, such as via prominent notice in the Xxytalk (KSA UK) Platform or to your email address on record, and where required by law, we will obtain your consent or give you the opportunity to opt out of such changes.

Posted on: 07-01-09 03:54 AM     Posted by: Paul

Welcome to XXYTalk!

This is an International Support Forum for 47xxy, Klinefelter's Syndrome and associated conditions.

We are a family of the X: XXY persons, their partners, parents of XXYs and mothers-to-be. Guests who are curious about XXY are also welcome.

Please take a moment and fill out your profile (under My XXYTalk, upper left). If you have a confirmed XXY diagnosis note it in your bio. No matter what you write about yourself in the profile, you are as anonymous as you want to be. So don't be shy.

The board is divided into topical forums and there is an appropriate section for whatever your interest is.

People may read your profile but they may not write to you about it. Please use the Forums to engage people in conversation.

XXY persons with confirmed diagnosis: after you have filled out your profile, please take a moment to answer a survey titled "XXYs only - what do you do for a living?" - this is our XXY wall of pride and we would be pleased to have a contribution from every XXY person.

Mothers-to-be: if you are struggling with a decision whether to continue your pregnancy, please give us a chance to tell you what we know about XXY. Our information comes of research and first hand experience, and may be quite different from what a doctor or geneticist has told you.

If you are a person who suspects they are XXY but hasn't been to a doctor about it, post about yourself in the forum titled "Am I XXY?" Do note that we are not doctors, we cannot diagnose or give medical advice, please don't expect us to.

The only way to confirm if you have the condition is to get the genetic test done.

If you haven't used a bulletin board system before this will be a new experience. There are lots of tips and tricks under the "Information" forums. And don't hesitate to ask for help.

We curious to know how you found us. Could you send Paul a Private Topic message and let him know?

Remember that you must be 16 years of age to register at this forum as a member, that you should not replace medical advice with anything you read at this forum and that as an offshoot of a UK Charity we do not discriminate against any minority as specified in the UK Equality Act of 2010.

This site is an offshoot of a UK Charity which funds the web hosting etc. more details can be found at www.ksa-uk.net

Again, welcome to the board!

the moderators

December 2023
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Current Quote
"Being 47xxy we meet the Intersex definition described by UN Human Rights:

"Intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Intersex is an umbrella term used to describe a wide range of natural bodily variations".

We don't have to use the word 'intersex' or the more recent term 'Variations of Sex Characteristics - VSC' but can still label ourselves by our gender or our own preference. However where there are laws protecting people with VSC we do need to know that 47xxy is included in such protections."
You must be 16 years of age or older to register in compliance with the Children's Online Privacy Protection Act (COPPA).
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