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Privacy Policy 

This privacy policy sets out how the Porphyria Association Inc. uses and protects any information that you give us when you use this website. Porphyria Association Inc. is committed to the protection of privacy. The collection of information is intended for the organisation only and for the purpose of sustaining membership and ensuring we have up to date contact information.


The Porphyria Association sets out terms of privacy on this page which may be amended from time to time. You should check this page to ensure you are aware of any changes.


Information we may require:

  • Name and title

  • Contact information including address, telephone, fax, email address

  • Membership details

  • Demographic information such as postcode

  • Other information relevant to surveys, and/or feedback


Use of Information

The information we gather may be used for the following purposes only:

  • Update our database

  • Membership renewals

  • Peer matching with your consent

  • Assessing needs and improving our services

  • Communications by way of periodic emails, newsletters and special events


Links to Other Websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.


Controlling your Personal Information

We will not pass on your personal information to third parties unless we have prior permission or we are required by law to do so.


If you believe that any information we are holding on you is incorrect or incomplete, please write or email us as soon as possible, at the address below. We will promptly address any corrections. 

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