Privacy Policy

Spotlight YOPD is a rare diseases Charity focused on raising awareness and providing support for those diagnosed with Young Onset Parkinson’s. Spotlight YOPD must process personal data so that it can provide these services – in doing so, the Charity acts as a data controller.

Our website address is:

Spotlight YOPD recognizes the importance of privacy and the protection of the rights of individuals with regard to the processing of personal data.

What rights do you have over your data

You have the following data protection rights:

  • The right to be informed about the personal data Spotlight YOPD processes on you
  • The right of access to your personal data that Spotlight YOPD processes
  • The right to rectification of your personal data should you believe that the data held by Spotlight YOPD is incorrect or misleading
  • The right to erasure of your personal data in certain circumstances
  • The right to restrict processing of your personal data. This may result in a reduced service or interaction with Spotlight YOPD.
  • The right to data portability. We can provide the data in a number of standard formats.
  • The right to object to the processing of your personal data that was based on a public or legitimate interest;
  • The right not to be subjected to automated decision making and profiling; and
  • The right to withdraw consent at any time.

Where you have consented to the Spotlight YOPD processing your personal data, you have the right to withdraw that consent at any time by contacting the CEO Spotlight YOPD by email at

Please note that if you withdraw your consent to further processing that does not affect any processing done prior to the withdrawal of that consent, or which is done according to another legal basis.

There may be circumstances where Spotlight YOPD will still need to process your data for legal or official reasons. Where this is the case, we will tell you and we will restrict the data to only what is necessary for those specific reasons.

If you believe that any of your data that Spotlight YOPD processes is incorrect or incomplete, please contact us using the details above and we will take reasonable steps to check its accuracy and correct it where necessary.

If you have an account on this site or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.


When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.

An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: After approval of your comment, your profile picture is visible to the public in the context of your comment.


If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.


If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year. If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.

Embedded content from other websites

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

Other Platforms

If you are invited to a specialist group for further discussion, then we may invite you to join either a Facebook group or similar GDPR compliant discussion forum.

Use of data processor

As part of our day-to-day business operations, Spotlight YOPD uses a data processors to, for example, retain information and send out our newsletter. As a controller, it is necessary for us to share selected personal data you have shared with us with this third party data processors.

On your behalf, Spotlight YOPD has ensured that the data processor used by us complies with GDPR.


If you sign up for our newsletter, we will ask you for your name and email address. We hold this information on our CRM system and use it solely for the purpose of keeping in touch with you via our emailed newsletter/magazine


If you agree to help us out by being a volunteer we will ask you a number of questions including your preferred forms and methods of contact and which areas you would be interested in and able to help the charity. We will hold this information on our CRM system and will use it to help stay in contact and match you and your skills to potential projects and fundraising opportunities.

How long we retain your data

If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue. Website administrators can also see and edit that information. Spotlight YOPD will retain your personal data only for as long as is necessary. Different laws require us to keep different data for different periods of time.

Where we send your data

Visitor comments may be checked through an automated spam detection service.