Data Privacy Policy

Groups such as Genetic Haemochromatosis Northwest Support Group (GHNW) are required to have a policy on why individuals’ personal information is collected, how it is used and stored. The purpose of this policy is to comply with the Data Protections Acts and the General Data Protection Regulation.

On what legal basis and why do we collect your personal information?

GHNW collects personal information on the basis of ‘Legitimate Interests’ for the following purposes:-

– To record a list of individuals who are contacts of GHNW

– To circulate notices and other relevant information of interest regarding GHNW events

– To circulate notices and other relevant information likely to be of interest

– To organise events and similar activities

What information do we hold?

Individuals’ names, postal and email addresses and telephone numbers. Contact details of event speakers. Contact details of people in health circles. Contact details of people who requested to join the GHNW contact lists. Photographs of individuals.

Who holds and uses this information?

The Chair, Secretary, Administration Officer and Communications Officer.

The Data Controller is the committee of GHNW.

Where is the information stored?

Electronic and paper records held by the Chair, Secretary, Administration Officer and Communications Officer, who will take steps to ensure that personal data is secure. Photos of individuals at events and activities may be displayed to promote GHNW subject to permission from the individual.

Retention of Personal Information

Records will be reviewed every three years. No information will be stored longer than is necessary.

Rights of Individuals

You can view, correct and/or erase the information we hold on you by contacting the Communications Officer

                                       by email to or

                                       by telephone to 07840 689 830

All personal data will be kept private and confidential and will only be shared with other officers of GHNW for purposes connected with GHNW. It will not be shared with or sold to any other organisation or third party.

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For more information about ‘Legitimate Interests’ as a basis for holding and processing personal data see the Information Commissioner’s Office website page and enter Legitimate Interests in the searchbox.

This Policy will develop when legislation and other circumstances change. The GHNW website will always show the latest version and a copy can be obtained from the contacts shown above.

Version: April 2019