Porphyria information days
We try to arrange two Open Days / Conferences a year for our members. These events help members understand their porphyria, and enable them to meet other people who are also living with porphyria.
Both events are free to attend, but booking is essential. If you would be interested in attending, please forward the names of anyone wishing to come with you to firstname.lastname@example.org or call 0300 30 200 30. We will send further details out a short while before each event.
At the beginning of October 2017, we held our Autumn Conference and AGM in Cardiff. The meeting was well attended with excellent feedback about the content and the opportunities to chat with others.
We are extremely grateful to all of the speakers/organisers who helped to make the day such a success. But special thanks go to Dr Badminton and Tricia Gardiner from the University Hospital of Wales in Cardiff/NAPS who were pivotal in providing excellent content and support, both in planning and on the day.
If you missed the day and would like to catch up on some of the content, please see the links below:
- Summary of International Conference on Porphyrins and Porphyrias
- Complementary therapies
- Update from Alnylam (please see www.alnylam.com for up to date information)
- NAPS and role of a specialist nurse
- Drugs in acute porphyria
- Update from Clinuvel (please contact email@example.com for slides)