Privacy Notice


SEDS is dedicated to protecting your personal data and being honest and transparent about what information we hold about you and how we process this data.


SEDS is the Data Controller for any personal information you provide to us regarding you. This means we decide how your personal data is processed and for what purpose.

In gathering and using this data SEDS is committed to protecting all individual’s rights of freedom and privacy and meeting the requirements of the Data Protection Act 1998 (DPA) and General Data Protection Regulation 2018 (GDPR) and other legislation.


What personal data do we collect about you

We may collect information that you share with us, whether this is collected online when you ‘become a member’, through social media (Facebook, Twitter, Instagram etc), register for a meeting, make a donation or via phone, email, letters, or face to face.


At times SEDS may need to collect personal data about you such as your name, date of birth, address, phone number, email address. Due to the aims of the group SEDS may also hold special category data regarding your health, race / ethnic origin.

How we use your personal data

Collecting relevant data from our members, donors and volunteers helps us to be more efficient and to collate information for fundraising and awareness building.


SEDS complies with its obligations under the DPA by keeping personal data up to date; storing and destroying it securely; not collecting or retaining excessive amounts of data; protecting personal data from loss, misuse, unauthorised access and disclosure and by ensuring that appropriate technical measures are in place to protect personal data.


SEDS hold and processes your data to be able to:


  • Support our members

  • Keep you up to date on our community group and information

  • Provide you with support for any medical needs you may have

  • Promote SEDS and to raise awareness (including feeding anonymised data into other organisations data collection) of EDS, hEDS and related conditions


Some of the data you provide to us is mandatory to carry out the contract you hold with us, some of it is provided on a voluntary basis. Where information requested is voluntary we will tell you at the time of collection whether this is the case and where personal data is not mandatory, we will give you the opportunity to provide your consent for us to use your data for that purpose.

Information about you will only be shared with the Management Committee and volunteers of SEDS. When you have indicated to us that you would like your experience or story shared with others, we will publish this on our website or social media platforms.

We will only pass your details on to others without your consent in exceptional circumstances when it is thought that there is likely to be significant self-harm or harm to others.


Confidentiality will always be respected when you share sensitive information about you or a family member or friend with us. We will only share that information with SEDS volunteers that may be able to help you. We will not give information about you to anyone outside of SEDS without your explicit consent unless the law or our terms and conditions allow us to.



Storage of data

All your data is either kept in our software systems or in paper format.  Personal data held within a software system will be securely protected with only certain members allowed to access this system.


All data stored in paper format will be kept in a safe location where only those who are authorised to access it, can. This may include being locked away in a filing cabinet.



Data retention periods

SEDS is committed to ensuring we do not hold personal data for any longer than necessary.

Once the data has been used for its original purpose and the retention period has expired, we will appropriately dispose of the data.



Further processing

If we wish to use your personal data for a new purpose, not covered by this Data Protection Privacy Notice, we will provide you with a new notice explaining this new purpose. Where and whenever necessary, we will seek your consent to the new processing.



Your choices regarding the information you provide to us

You have a right to request a copy of all the information we hold about you. You may request to amend this information or remove it (unless there is a legal requirement for us to keep it). Email with your request.

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