Become a member or update your details
New to porphyria? Why not become a member!
Moved house?We need to know if you want to continue receiving newsletters.
Please use the form below to become a member or update the contact details we hold for you.
UPDATE June 2025:
We have just been made aware that our Member Form has not been working for some time. While we work on sorting this out, please send any address changes or new member requests to helpline@porphyria.org.uk. If you completed the form during March, April or May, we suggest that you re-send details to us, so that we can make sure we have your details on file.
Please tell us your full name, address, email, phone number, type of porphyria and confirm that you are happy for us to contact you with updates. If you have a preference for email or postal newsletters, please tell us that too. The default position will add you to our email distribution list rather than postal distribution list.
Thank you for your understanding and patience while we sort this issue.
The General Data Protection Regulation (GDPR) was designed to enable individuals to better control their personal data. It came into effect on 25th May 2018 and affected the way we could contact you. After this time, if you still wanted to receive our newsletters, leaflets and information on our events, we needed your explicit consent.
We supported these important legal changes and wanted to make sure that you only received information from us that you want to received, and in the ways that you like. So, if you didn’t opt in during the months that followed, we were obliged to delete your details. However, it is very easy to set them back up again. Simply complete the form below and we will add you back on to our database to receive BPA information.