Privacy Policy 

Action FCS exists to raise awareness and educate the public and healthcare professionals about FCS.  We support people affected by the condition to lead full, healthy and integrated lives, and we advocate for excellent care and access to new medicines.  In the course of our work we collect information about the people we are in contact with to help us to further our aims.   

 We are committed to maintaining high standards of security and confidentiality for information in our control. 

 We have updated our privacy policy in line with the General Data Protection Regulations (GDPR) 2018 which govern how personal data is collected and controlled 

 This privacy policy aims to inform you about: 

  • The information we collect 
  • How we collect information  
  • Why we collect information 
  • Information we collect via the website Information we collect from our Facebook pages 
  • Cookies 
  • Links to third party websites 
  • Working with service providers 
  • How long we keep your personal information 
  • Sharing, processing and storing your personal information 
  • What happens if there is a data breach 
  • Your rights of access to your data 
  • Future changes to our policy     

What information do we collect? 

The information we collect can be personal data, sensitive personal data and non-personal data and can be from patients, caregivers, volunteers, staff, researchers, healthcare professionals, staff, commercial businesses etc.   

  • Non personal data is information such as IP addresses (the location of your computer on the internetThis information doesn't tell us anything about who you are or where you live.  
  • Personal data includes your name, age, email address, telephone number and your postal address. 
  • Sensitive personal data includes information about your patient or caregiver status, your cultural background and your religious beliefs (if relevant) and relevant financial details needed to pay expenses etc 

We keep records of the details of your contact with us in order that we can best support you over time. 

How do we collect this information? 

We collect this information through your contacting us either by email, through the website, by telephone or meeting you face-to-face, or through our Facebook pages.  We need your explicit, written consent to keep your data.  This can be given by email or by completing our online or paper contact form.  If you are already on our database before the change in the law (May 25th 2018) we are required to ask for your explicit consent to retain your records and abide by the response you give us.  However, if we do not get a response from you we are allowed, under the law to retain your records for the purposes of sharing relevant information related to support and supportive events.  We would not, in these circumstances be allowed to contact you with fundraising requests or any marketing materials. 

Action FCS does not knowingly collect personal information from anyone under the age of 16 unless they are accompanied by written parental consent.  Otherwise we can accept your details from a parent or guardian. If we become aware that the sender is under 16 we will delete all information immediately unless we have received parental consent for the information to be processed by us.   

Why do we collect this information?   

We collect this information in order to ensure that our contact with you is appropriate and legitimate.  We use it to alert you to news relating to lipoprotein lipase deficiency/familial chylomicronaemia syndrome (LPLD/FCS), invite you to participate in events and initiatives related to LPLD/FCS, and to reimburse expenses etc. We may also, in the future, contact you about fundraising and marketing initiatives, but only if we have your explicit consent to do so. 

You are free to change your mind about your preferences at any time. To do so please email or call us on 07517 752168. 

What data do we collect when you use our website? 

We do not collect personal data when you use our website although some anonymous information is collected through the use of cookies. 

What data do we collect when you use our Facebook pages? 

When you post comment on our Action FCS Facebook page your data is publicly accessible and can be viewed online and collected by third parties.  We are not responsible for the use of data collected in this way.  Private messages sent through messenger are collected by the administrators of the site (currently the Chair of Action FCS).  If you share further personal data through the Messenger service of this platform you will be asked to consent to the collect of your data for our database. 

What are cookies? 

A cookie is a small file that asks permission to be placed on your computer’s hard drive and gives anonymous information such as when you visit a particular site, which pages you open etc.  You can choose to accept or decline cookies. 

Links to third party websites 

Our website contains links to third party websites which in some instances may lead you to the possibility of providing personal information to them.  Whilst we endeavour to ensure that the privacy policy of any third party website is GDPR compliant, we have no control over the changes made to the policies of these websites so we would encourage you to be mindful of their relevant privacy policies. 

When we work with service providers 

From time to time we work with other organisations to provide a service.  We use due diligence when working with any such third party to ensure, like us, they adhere to and comply with the GDPR. 

How long do we keep this data? 

As a patient organisation we are permitted to keep your data indefinitely to meet the aims of our organisation unless you request us to update, restrict or delete any of the personal data we hold about you.  In this instance please email  or call us on 07515 752168.  We will action your request within 28 days.  Please keep us updated on any changes to your data so that we can continue to provide you with information and support. 

Sharing your information 

We do not share your data with any third party without your express permission to do so unless we are required to do so by law or because we feel you, or someone close to you is at risk of harm.  If this is the case, we will try to let you know we are doing this before we do so. 

Who processes your information? 

Information is currently processed by the trustees of Action FCS.  In the future it may be collected by other volunteers or by paid staff, all of whom will be made aware of our privacy policy and expected to comply with it. 

How is this information stored? 

Action FCS takes every reasonable precaution to ensure your data is secure by using password protected documents on a password protected computer with up-to-date anti-virus protection. However online security is never 100% guaranteed so please bear this in mind when sharing your data with us. 

What happens if there is a data breach? 

In the event of a serious data breach which is likely to result in a financial or social risk the data processor will inform the Information Commissioners Office (ICO) and the individual(s) concerned within 72 hours.  

Your rights of access to your data (Subject Access Requests SARs) 

You have the right to access your personal information held by Action FCS.  Requests must be made in writing, by post and signed by you, or by email from your recognised email address, and addressed to Chair, Action FCS at 36 Gaskell Street, London, SW4 6NS.  This information is obtainable free of charge (other than a reasonable administration fee for providing additional copies of information), unless the request can be said to be ‘manifestly unfounded or excessive’ for example where repetitive requests are made.  In those rare cases we may choose to refuse the request entirely, or comply, subject to a reasonable administrative fee being paid.  Information will be provided as soon as possible and within 28 days of your request. 

Changes to our privacy policy 

Action FCS may update its privacy policy from time to time.  When we change the policy in a material way a notice will be posted on our website along with the updated privacy policy. 

This policy was last updated in May 2018.

This policy will be reviewed bi-annually, next review May 2020