Past events

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

At our recent committee meeting the British Porphyria Association agree to move to a new logo. This is now being used at the top of each page. It is based on the chemical representation of a porphyrin molecule.

We had a successful committee meeting of the BPA on 4th February.
It was held at St Joseph’s RC Church, Castleford, between Leeds and Ferrybridge.
This was open to all BPA members and their families.

In the main committee meeting we confirmed the dates of our next two meetings:
June 17th at Buckden near Cambridge, for a committee meeting, and
October 14th in SE London for our AGM.
Both of these will include talks by medical experts – details to come.

We agreed on a new logo. This is shown at the top of this page. It is based on the chemical representation of a porphyrin molecule. We have been working on it for 6 months, and this version was liked by all present.

We also discussed several leaflets about porphyria, and one about the BPA. Four of these are almost at the stage where they will be circulated to our medical advisors for comments and approval.

We were very pleased to welcome a representative from Climb (Children Living with Inherited Metabolic Diseases), and also a representative from GIG(Genetics Interest Group).
They both give brief but informative talks on their organisations. Climb concentrates on support of their members with their problems; while GIG concentrates on advising and lobbying government, and other organisations, that involve issues with inherited metabolic diseases.
They both answered general questions from BPA members.

Following the formal meeting, there was good opportunity to talk to other members, while enjoying a buffet.

We also had a discussion (after the buffet) about National Porphyria Awareness Day for 2006. The main purpose is to raise awareness of porphyria and we will be sending out some ideas on what they could do, to all our members.

We had our AGM on Saturday, 1st October 2005 at 2.30, at Hope Hospital, Salford, Manchester.

We re-elected most of last year’s committee, with a change in correspondence secretary to Sarah Pepperdine.

We were pleased to welcome Professor George Elder , who is one of the longest-standing British experts on Porphyria. He gave an interesting talk on ‘Gene tests for Porphyria : what they can and cannot do’. Following this he answered a wide range of questions from our members.

After the AGM, and over food, there were informal discussions and a chance to talk to other members.

Dr Stewart organised an open day in Salford, Manchester, on 1st June – Porphyria Awareness day.

It was at Humphrey Booth Lecture Theatre, Hope Hospital , Salford

It consisted of a joint educational meeting which brought together patients, specialists and other healthcare professionals who deal with various aspects of the porphyrias to increase awareness and understanding. The lecture theatre was full to capacity, with about 40 BPA members, and over 40 healthcare professionals. Four very interesting lectures were given on various aspects of porphyria.

This was followed by a tour of the Clinical Biochemistry Porphyrin Laboratory and the Photobiology Unit, for BPA patients and their families; to show them aspects of the porphyria diagnostic and research work carried out at Hope Hospital .