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We have updated our processes and practices 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 the 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 International Gaucher Alliance (IGA) is a Joint Data Controller pursuant to the GDPR.  All employees of the IGA with managerial or supervisory responsibilities are responsible for ensuring that good personal data handling practices are developed, reviewed and encouraged within the IGA, as per their individual job descriptions.

Data Controller

Jo Higgs is the named Data Controller for the IGA and reports to the IGA’s CEO and Board of Directors and is responsible for ensuring that the IGA 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.

Jo Higgs (Data Controller) can be contacted in the following ways:

Telephone:01453 796402

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

What information do we collect?

  • Name
  • Address (home/work)
  • Telephone (landline/work/mobile)
  • Email address
  • Date of birth (if under 16)

How do we store your personal information?

We are committed to ensuring that your information is kept secure.  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 IGA
  • Information and interaction with the IGA’s Central Team
  • Information and updates regarding research, clinical trials, treatment and care options relevant to Gaucher disease
  • Information about raising awareness events and activities
  • Received information about research projects conducted by the IGA or by third-party agencies 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 IGA will keep your personal information stored securely kept for 5 years. After this period the IGA will ask data subjects to re-consent for their 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:

We can send you these forms by post; simply contact us by email or call us on 01453 796402.  Please either call us or email us and we can assist you in updating your preferences.  You can also write to us at: International Gaucher Alliance, 8 Silver Street, Dursley, Gloucestershire GL11 4ND, UK.

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

Data Subject Consent form

What if I don’t want to hear from the International Gaucher Alliance 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.  Please complete the Data Subject Withdrawal of Consent form and return it 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 IGA.  Our Subject Access Request procedure outlines how the IGA will comply with the requirements of the GDPR regarding this.

Please complete the Subject Access Request form  and return it to the Data Controller.