Privacy policy

IPIG are committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this website, you can be assured that it will only be used in accordance with this privacy statement. We may change this policy from time to time by updating this page. […]

IPIG are committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this website, you can be assured that it will only be used in accordance with this privacy statement.

We may change this policy from time to time by updating this page. You should check this page frequently to ensure that you are happy with any changes. This policy is effective from 1 September 2016.

Security

We are committed to ensuring that your information is 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 online.

Links to other websites

Our website contains 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

You may request details of personal information which we hold about you under the General Data Protection Regulation (GDPR) 2018. A small fee may be payable. If you would like a copy of the information held on you, please contact us.

If you believe that any information we are holding on you is incorrect or incomplete, please write to or email the secretariat as soon as possible. We will promptly correct any information found to be incorrect.

Become a member

If you are a clinician, academic, and/or researcher involved or interested in PNH research or care and are not currently an IPIG member, please considering applying for membership. There are no joining fees or membership dues. Learn more on our membership page and/or email your membership questions to [email protected]

Apply for membership