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.