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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 .

A committee meeting of the BPA was on 18th June in Swindon at 1.30pm, until about 4.30pm, and held at:
St. Paul’s Church,
St. Paul’s Drive,
Swindon SM3 5BT .

This is open to all BPA members and their families.

We are also having an evening social event at the same venue. So do please come along with family and friends, and meet others with porphyria, and have a good time.