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Open committee meeting June 2006

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.

 

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OPEN DAY at Cardiff Hospital

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

 

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