Privacy Policy

Think Again. Think NPC is an international campaign to improve diagnosis of Niemann-Pick type C disease (NPC), by raising awareness of the signs and symptoms of the disease amongst healthcare professionals unfamiliar with the condition. This is a project co-ordinated by the International Niemann-Pick Disease Alliance.

The information on this site is not country-specific.

Any use of this website is subject to the following terms, conditions and applicable law. Your access to and browsing of this website implies your agreement to all such terms, conditions and applicable law. If you do not agree to any of these terms, conditions and applicable law, you may not use this website. Therefore, we urge you to read the following terms and conditions carefully prior to using this website. Please note that we may revise or terminate these terms and conditions for any reason at any time and without further notice. Therefore, as you are bound by any such amendments, you should periodically visit this page to review the then valid terms and conditions.

For the purpose of the Data Privacy Policy, “we”, “us”, “our” refers to the International Niemann-Pick Disease Alliance.

Data Privacy policy

The term “personal data” as used in this section refers to any information that can be used to identify you, such as your name, birth date, e-mail or mailing address.

We may use your Personal Data:

  • to administer the website including statistical analysis
  • to enable your use of the services available on the website
  • to personalise your visit to the website, assist you while you use the website and deal with your comments and respond to your queries
  • to contact you via email, telephone or by ordinary mail if you have requested this
  • to understand who uses the website and how, using cookies and page tagging techniques to help us improve the website, and to better understand needs and interests of visitors and users in order to improve the website
  • to comply with applicable laws, regulations or codes of practice
  • for all other purposes to which you have consented

This helps us to:

  • improve the site by monitoring how you use it
  • respond to any feedback you send us, if you’ve asked us to
  • provide you with information about local services if you want it.

We cannot personally identify you using your data.

Keeping your data secure

  • Transmitting information over the internet is generally not completely secure, and we cannot guarantee the security of your data
  • Any data you transmit is at your own risk
  • We have procedures and security features in place to try and keep your data secure once we receive it
  • We will not share your information with any other organisations for marketing, market research or commercial purposes, and we do not pass on your details to other websites
  • This Privacy Policy applies solely and exclusively to this website.

Linking to and from

  • As a service to visitors, this website may contain links to other sites on the internet that are owned and operated by third parties
  • We welcome and encourage other websites to link to the information that is hosted on these pages, and you do not have to ask permission to link to
  • However, we do not give you permission to suggest that your website is associated with, or endorsed by,
  • Where our site contains links to other sites and resources provided by third parties, these links are provided for your information only. We have no control over the contents of those sites or resources, and accept no responsibility for them or for any loss or damage that may arise from your use of them
  • Any activity mentioning the Think Again. Think NPC campaign on sites outside of this website is the responsibility of the International Niemann-Pick Disease Alliance.


  • Is maintained for your use
  • We aim to update our site regularly, and may change the content at any time
  • By using this site, you indicate that you accept these terms of use and that you agree to abide by them. If you do not agree to these terms of use, please refrain from using our site.

Virus protection

  • We make every effort to check and test material at all stages of production, however you must take your own precautions to ensure that the process which you employ for accessing this website does not expose you to the risk of viruses, malicious computer code or other forms of interference which may damage your own computer system
  • We cannot accept any responsibility for any loss, disruption or damage to your data or your computer system which may occur whilst using material derived from this website.


  • Even though Think Again. Think NPC aims to provide accurate and up to date information on the website at any time, you acknowledge that the website is made available “as is”
  • We do not give any warranty or representation, whether expressly or implied, of any kind related to the content of this website (including, without limitation, text graphics and links). Moreover, we take no responsibility or liability whatsoever related in any way to your use of this website and its content
  • We take no liability for the accuracy, adequacy, completeness, comprehensiveness, usefulness, reliability or timeliness of the content of this website
  • We do not give any warranty, whether expressly or implied, that the functions contained in the website will be uninterrupted or error-free, that defects will be corrected, or that this website or the server that makes the website available are free of viruses or other harmful components
  • We reserve the right to interrupt or discontinue any or all of the functionalities of the website, and takes no liability whatsoever for any interruption or discontinuance of any or all of the functionalities of the website

As some jurisdictions do not allow the exclusion of implied warranties, some of the above-mentioned exclusions may not apply to you.


If you have any queries concerning the LEGAL AND PRIVACY POLICY, how we use your personal data or should you wish to exercise any of your data protection rights please contact the International Niemann-Pick Disease Alliance by emailing

Cookies policy

All cookies set from this site are privacy neutral: They only collect anonymous information on the pages visited and are used to improve your experience while using this website.

A cookie is a small file which asks permission to be placed on your computer’s hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.

We use traffic log cookies to identify which pages are being used. This helps us analyse data about web page traffic and improve our website in order to tailor it to customer needs. We only use this information for statistical analysis purposes and then the data is removed from the system.

Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.

On 26 May 2011, the Privacy and Electronic Communications (EC Directive) (Amendment) Regulations 2011 came into force. It covers the use of cookies and similar technologies for storing information, and accessing information stored, on a user’s equipment such as their computer or mobile.

The cookies used on this website site are as follows:

Google Analytics _utma
These cookies are used to collect information about how visitors use our site. We use the information to compile reports and to help us improve the site. The cookies collect information in an anonymous form, including the number of visitors to the site, where visitors have come to the site from and the pages they visited. Click here for an overview of privacy at Google
Seen Cookie Prompt cb-enabled = true A cookie is set to remember if a user has been alerted to the use of cookies on this website.
HCP Prompt hcp=true A cookie is set to remember if a user has been alerted to the geographical restrictions to this website.

The about cookies website provides guidance on how you can manage or remove cookies