Cardiff Hospital Porphyria Service hosted an Open Day on porphyria on Saturday June 3rd.
It toke place at the Cardiff Medical Centre Sports and Social Club on the University Hospital of Wales site in Cardiff.
The program started at 11am, with refreshments from 10.30
In the morning there will be lectures on porphyria by local experts. Lunch will then be provided.
After lunch there will be a tour of the labs that cover porphyria testing. This will include the only labs in the UK that do genetic testing of those with porphyria and their relatives.
Between lunch and the tour, there will be an “Any Questions” style question and answer session, with local medical experts and members of the BPA committee.
We are inviting BPA members and other local people with porphyria, and also local medical staff to increase their knowledge of porphyria.
If you are planning to come, please let us know. BPA will be covering the cost of the day (including lunch) for our members and their families. So for this, and for security, we need to have a list of those who wish to come.
If you wish to come, please email chair@poprhyia.org.uk, or phone our help-line 01474 369 231
If you have any questions that you would like answered, please include those when you email us.
Also let us know if you would like a map of how to get there.
Last June we had an open day at Hope Hospital (Manchester), and this was very successful. Those that came found it very useful and informative, so we hope many of our members will be able to come to this year’s at Cardiff.
Porphyria awareness day – programme
Time Speaker Event
10.30am Refreshments
11.00am Dr. Mike Badminton Welcome
11.15am Mrs. Anne Newton Introduction to the BPA
11.30am Prof. George Elder Cutaneous porphyria
12.15pm Dr. Mike Badminton Acute porphyria
12.45pm Dr. Sharon Whatley “Spelling” mistakes in DNA
cause porphyria.
13.15pm Lunch
14.15pm All Question & answer session
15.15pm Laboratory tours
16.00pm End