Privacy Policy Amy and Friends, the Netherlands.

Cockayne Syndrome and Trichothiodystrophy support.

This privacy policy sets out how Amy and Friends, The Netherlands uses and protects any information that you give us when you use this website.

Amy and Friends, The Netherlands is committed to ensuring that your privacy is protected, by the GDPR regulations effective 25th May 2018. Should we ask you to provide certain information by which you can be identified when using this website, then you can be assured that it will only be used in accordance with this privacy statement.

Amy and Friends, Netherlands may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. This policy is effective from 25th May 2018.

What we collect – personal data

We may collect the following information that you share with us directly. This covers information that you don’t share with us directly, but that is shared with us by other organizations with your active permission. This might happen if you have used independent fundraising platforms such as for example ‘’.

  • Name and job title
  • Contact information including email address and IP address
  • Demographic information such as postcode, preferences and interests
  • Other information relevant to supporter surveys

We may also collect data from publicly available sources. This information will be used to understand your philanthropic interests and activities, enabling us to understand how likely you are to support Amy and Friends Netherlands’s work. This helps us understand our supporters better and helps us make appropriate request for your support and ensures that we are making best use of our time and resources.

What we do with the information we gather

We require this information to understand the needs of our supporters and of families of people with Cockayne Syndrome and Trichothiodystrophy so that we can provide a better service and in particular for the following reasons:

  • Internal record keeping
  • We may use the information to improve our services
  • We may periodically send promotional emails about new campaigns or other information which we think you may find interesting using the email address which you have provided
  • From time to time, we may also use your information to contact you for survey purposes. We may contact you by email, phone, fax or mail
  • We may process your data to customize the website or email communications we have with you. Some of these processes are automated. However, processing is conducted fairly, with use of robust statistical methods, and is tested thoroughly to minimize risks of mistakes or inaccuracies. Data is stored securely throughout all this processing.
  • As part of our day-to-day work, we may engage service providers who operate on our behalf. In these circumstances, they will only have access to the personal information they need to fulfil that service and will only use that information strictly for the purposes for which they have been instructed by us.

Examples of service providers include a payment provider who processes donations for us, or a mailing service who sends and records e-communications on our behalf. These service providers will under no circumstances contact you or pass your information on to any other third party who may do so.

What we collect – protected data

In addition to personal data as specified above, we also hold data that is considered protected under the GDPR as a part of our patient registry. We have compiled this patient registry in line with our charitable objectives to further the research to Cockayne Syndrome and Trichothiodystrophy and related DNA repair disorders.

These data are held by us and are strictly used only for the processes that you have explicitly agreed to. They will not be shared with any third-party company without your explicit prior consent.


We are committed to ensuring that your information is secure. In order to prevent unauthorized access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.

Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.

Controlling your personal information

You may request details of personal information which we hold about you under the upcoming GDPR regulations, effective 25th May 2018. In particular, you have the following rights with regard to the data we hold on you:

  • The right to be informed – detailed in this privacy policy, as to the nature and uses of your data, where and how it is held, and how it is used
  • The right of access – you have the right to obtain from Amy and Friends information regarding whether your data is being processed, access to your personal data, and other supplementary information
  • The right to rectification – if any of the data we hold on you is inaccurate or incomplete, we will rectify and amend where necessary
  • The right to erasure – if you no longer wish for Amy and Friends, Netherlands to hold or process your data, you may request us to erase your records
  • The right to restrict processing – you may request that we no longer process your data
  • The right to data portability – as detailed below
  • The right to object – if you object to your data being collected or used, will stop processing this data

You may also choose to restrict the collection or use of your personal information in the following ways:

  • Whenever you are asked to fill in a form on the website, look for the box that you can click to indicate whether you do or do not give consent for your information to be used by Amy and Friends for direct marketing purposes
  • If you have previously agreed to Amy and Friends using your personal information for direct marketing purposes, you may change your mind at any time
  • If you would like a copy of the information held on you please write to:
    Stg. Amy and Friends, Netherlands
    Heilige Geeststraat 14
    5521LC Eersel
    Tel: +31 6 53 34 25 30
    K.v.K.: 57185360

If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect.

We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. Finally, we may occasionally use your personal information to send you promotional information about third parties which we think you may find interesting if you give us your consent.