The Italian Porphyria patients support group held an International Porphyria Conference in Rome, on October 26th and 27th.
It was a very valuable meeting of patients, with talks by support groups, and medical experts. The conference languages were English and Italian.
Two of our committee attended, and will be reporting on it in a future newsletter.
The Italian Porphyria patients support group held an International Porphyria Conference in Rome, on October 26th and 27th.
It was a very valuable meeting of patients, with talks by support groups, and medical experts. The conference languages were English and Italian.
Two of our committee attended, and will be reporting on it in a future newsletter.
We had our AGM on Saturday, 14th October 2006 at 2.30,
at Queen Mary’s Hospital, Sidcup, SE London.
We were pleased to welcome Dr Robert Sarkany, from St. Thomas’s Hospital. He is a national expert on the skin porphyrias. He gave a talk after the formal part of the AGM, and was then willing to answer questions.
After the AGM, and over food, there was chance for informal discussions with Dr Sarkany, the committee and other members.
We had a committee meeting of the BPA on 17th June, 2006 .
It started at 1pm, and finished at 6.30, after a buffet tea.
It was held at Buckden, near Cambridge
at:
Buckden Millennium Community Centre,
Burberry Road,
Buckden,
Huntingdon, Cambs,
PE19 5UY
The venue is just off the A1, south of Huntingdon. Turn east of the A1 at the roundabout in Buckden
Our committee meetings are open to all BPA members and their families.
We had Prof. Cox, a leading expert on porphyria to talk to us after the formal business. He gave an very informative talk lasting an hour, and answered questions from BPA members.
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.
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
