Nail Patella Syndrome UK is committed to protecting the privacy of those who register with and others who visit our websites. Any personal details you supply to Nail Patella Syndrome UK via e-mail from our websites, including any sensitive data, will only be used by Nail Patella Syndrome UK and will not be made available to any Third Party without permission. However, you should be aware that if you use standard e-mail for communication with Nail Patella Syndrome UK, we cannot guarantee that it remains confidential whilst in transit.

All e-mail sent through Nail Patella Syndrome UK systems will be monitored and checked to ensure our systems operate effectively and securely. All e-mail messages sent through Nail Patella Syndrome UK systems, to other members of this site may be recorded automatically for security and data integrity purposes.

In addition to this we do log your IP address which is automatically recognised. We will only collect information that is relevant to providing the service.

Given the global nature of the World Wide Web and with the exception of your real name and e-mail address (which remain accessible only to you and authorised Nail Patella Syndrome UK) any posting within this site by you is, of course, accessible to internet users around the world. You are advised not to include direct references to real people, institutions or organisations within the fields of your registration.

This privacy policy only covers our own websites; links within this site to external websites are not covered by this policy.

The following information does not form part of the Terms of Use.
What are cookies?

Cookies are small text files used in a wide range of websites which are stored locally on your PC. They generally contain information about your visits to the relevant site. Sometimes if you have to login to a website you may see a checkbox which says "Remember me next time" - this generally sends a cookie to your PC which contains your login name.

Are cookies used in www.npsuk.org?

We do use cookies to help us determine how many new users we get each day, to determine which affiliate first pointed you to our site, and to store a unique identifier that allows us to monitor traffic patterns.

At no time do we store or retrieve any information other than that described above. No personal information about you is stored on our website or within cookies.We never pass any information we may have about you or your visits to this site to anybody else.
If you think Nail Patella Syndrome UK would be interested in linking to your website please e-mail your request. We get several requests and our priority is to link to the sites of UK-wide support groups for specific conditions. We reserve the right to choose which sites we include and will not enter into any correspondence about our decision process. Our policy is as follows:

Nail Patella Syndrome UK aims to include links to websites that provide relevant and useful information for parent carers and their families, healthcare professionals and researchers working in the field. We will only provide links to websites that fulfil one of the following criteria:

1.1 organisations, associations and voluntary support groups providing information and support on:

parental and family support, or

rare disorders and syndromes, life threatening illnesses, or

childhood and late onset diseases and disabilities

discrimination and legal rights.

1.2 lifestyle-related sites providing useful information on aspects of healthy living.

1.3 UK government sites [England, Wales, Scotland and Northern Ireland] and relevant public sector organisations.

1.4 professional organisations and journals aimed at healthcare professionals and medical researchers.

1.5 research-related sites providing information relevant to nail patella syndrome.

1.6 corporate sector organisations involved in a fundraising or sponsorship partnership with Nail Patella Syndrome UK.

1.7 if it is deemed appropriate to link to a website to provide specific information on products or services.

2. In addition to these criteria:

2.1 we will not knowingly provide links to sites that contain illegal, offensive or misleading information.

2.2 where an organisation has regional or local services and associated websites, we will only link to their national website.

2.3 we will not knowingly provide links to sites that provide information about unproven therapies or products.

2.4 we aim to link to UK-based websites to ensure information is appropriate and relevant to Nail Patella Syndrome UK 's stakeholders, and will only link to non-UK based websites when no equivalent website exists in the UK.

Links will be provided based on the above criteria and at the discretion of Nail Patella Syndrome UK 's web team. Although we endeavour to check sites for high quality, accurate and appropriate information, Nail Patella Syndrome UK does not endorse nor accept any responsibility for the content of other websites. We would caution all users to consult with their own healthcare team before making any changes in their management regime.
We welcome your comments about any of our sites. Please e-mail info@npsuk.org with your views or if you find any broken links, stating which website you are referring to.
If you wish to complain about any aspect of Nail Patella Syndrome UK's service, please e-mail info@npsuk.org.
Nail Patella Syndrome UK is a charity funded by voluntary contributions and by donations. Where sponsorship has been received, this is gratefully acknowledged on our website. Any advertisements are accepted on a commercial basis but are subject to our internal ethics policy. Nail Patella Syndrome UK cannot accept responsibility for any goods or services supplied by advertisers or sponsors. All Nail Patella Syndrome UK information is editorially independent and is not influenced by sponsors or advertisers.

Nail Patella Syndrome UK is a UK-wide charity providing support, advice and information.
 
 
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