We have updated our processes and practice to ensure that we comply with the new General Data Protection Regulation (GDPR), which has now come into effect and replaces the Data Protection Act (1998).

However, by making this change and only contacting you in ways you choose, we will be able to communicate with you more effectively and ensure you are receiving the information you want in the way you want to receive it.

Responsibilities under the GDPR

The Gauchers Association is a Joint Data Controller pursuant to the GDPR

All employees of the Gauchers Association with managerial or supervisory responsibilities are responsible for ensuring that good personal data handling practices are developed, reviewed and encouraged within The Gauchers Association, as per their individual job descriptions.

Data Controller  

Sarah Allard is the named Data Controller for The Gauchers Association and reports to The Gauchers Association's Board of Directors and is responsible for ensuring that The Gauchers Association is GDPR compliant.

The Data Controller shall at all times be the first point of contact where guidance is required in relation to any aspect of data protection compliance, as well as other procedures such as Subject Access Requests, complaints or objections to information being processed.

Sarah Allard (Data Controller) can be contacted in the following ways:

  • Email:

  • Telephone: 01453 549231

  • Post: 8 Silver Street, Dursley, Gloucestershire, GL11 4ND

What information do we collect?

  • Name

  • Address home / work

  • Telephone landline / mobile

  • Email

  • Date of Birth (if under 16)

How do we store your information?

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

What do we use your information for?

We will only contact you about the areas of our work you choose via the communication methods you prefer; these include:

  • Information and updates regarding services from The Gauchers Association

  • Information and interaction with The Gauchers Association's Patient and Family Support Service or Central Team

  • Information and updates regarding research, clinical trials, treatment and care options relevant to Gaucher disease

  • Information about fundraising events and activities

  • Information about research projects conducted by The Gauchers Association or by third-party agency's on behalf of pharmaceutical companies

We will only use your personal details to provide the service(s) that you have requested and communicate with you in the way(s) you have agreed to.  Your details may also be used for analysis purposes, to help us provide the best possible service.  We will not pass on your details to anyone else and we will only share them if required to do so by law.

Download Fair Processing Notice

How long is my information kept?

Unless you change your mind, The Gauchers Association will keep your personal information stored securely for 5 years.  After this period The Gauchers Association will ask data subjects to re-consent for their personal information to be kept

What if I change my mind?

If you change your mind about your choices, you can update your preferences at any time and by any of the following methods:

  • To unsubscribe completely download the Data Subject Withdrawal Consent Form and email it to us at

  • To change your preferences, complete our Data Subject Consent Form

  • We can send you a form by post, simply contact us by email or call 01453 549231

  • Call us on 01453 549231 and we can assist you in updating your preferences

  • Write to us at: Gauchers Association, 8 Silver Street, Dursley, Gloucestershire, GL11 4ND

  • We will update you contact preferences on our systems within one month of receiving your request

What if I don't want to hear from the Gauchers Association anymore?

You have the right to withdraw your consent at any time.  Full details of how to withdraw consent are detailed in our Right to Withdraw Consent Procedure

Complete the Data Subject Withdrawal of Consent form and return to the Data Controller

How can I access the data you hold about me?

You have the right to request access to the information in respect to personal data and how this is recorded by The Gauchers Association; the Subject Access Request Procedure outlines how The Gauchers Association will comply with the requirements of the GDPR regarding this.

Complete the Subject Access Request Form and return to the Data Controller