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
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
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.