British 
News Archives
AGM and half-day conference
Saturday, 6th October, 2007, in Cardiff
We had a half-day conference in University Hospital of Wales, Heath Park, Cardiff, CF14 4XN. It will be starting at 2.30
We had a brief AGM. Then there were talks on porphyria by Dr Mike Badminton, a leading UK expert on porphyria, and then Dr Ruwani Katugampola will be reporting on her research work on CEP which we are helping to fund.
There was then a question and answer session on both porphyria and the BPA , followed by a chance to talk to other people with porphyria, over a free buffet tea!
OPEN DAY at Kings College Hospital
Saturday, 2nd June, 2007
April/Aug 2007
Kings College Hospital hosted an Open Day on porphyria on Saturday June 3rd, in association with the British Porphyria Association.
It was held at King’s College Hospital, Denmark Hill, London SE5.
We started at 10.30, with talks in the morning. These were on the various types of porphyria and their testing. Following lunch we had a question and answer session; and then a tour of the labs for BPA members.
Previous open days have proved to be very popular, so did this one.
Open committee meeting
June/Aug 2007
We held an open committee meeting of the BPA on the afternoon of 23rd June 2007, in Durham City.
It was at Elvet Methodist Church, Old Elvet, Durham, DH1 3HL,
and started at 2.30pm .
(Our apologies that a recent letter to our members gave the wrong date!)
Open committee meeting
Jan 2007
We held a committee meeting of the BPA on 17th February, 2007, in Reading.
It started at 2pm, and finished by 6.00, after a buffet tea.It was held at: Wesley Methodist Church Hall
84 Queens Road, Reading, RG1 4BWAs well as the formal business, we will be giving a summary of the results of the questionnaire on acute porphyria attacks we sent out last year. Also we will be showing the DVD on porphyria produced by the American Porphyria Foundation. It covers all types of porphyria.
Following the meeting, there will be informal discussions and the opportunity to talk to other members.
If you wish to attend, please let us know.
International Porphyria meeting in Rome
July/Nov 2006
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.
AGM, 2006
June/Nov 2006
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.
Open committee meeting
June/Nov 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 5UYThe 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.
OPEN DAY at Cardiff Hospital
Saturday, 3rd June, 2006
May/June 2006
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
BPA's new logo
Apr 2006
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.
Newsletter, May 2006
June 2005
We have circulated our May newsletter to our members. You can download a copy of it here. (a pdf file, 100kB in size, so it will take a couple of minutes to download via a modem.)
You can download a copy of our November 2005 newsletter here (it is 650kB in size).
You will need Acrobat reader to view them. If you do not have acrobat reader, follow this link to download it onto your computer.
Open committee meeting
Feb. 2006
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.
AGM, 2005
October 2005
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.
Open Day at Hope Hospital , June 1st 2004
June 2004
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 .
Porphyria Awareness Day
May 2005
We celebrated 1st June as Porphyria Awareness day.
The Canadian Porphyria Foundation have been celebrating 1st June in this way for several years, and from this year we are joining them.
We plan to raise the profile of porphyria via the media on this day.
Dr Stewart is organising an open day in Salford, Manchester
Venue: Humphrey Booth Lecture Theatre, Hope Hospital , Salford
Date and time: Wednesday June 1st 2005 11.00h-14.00h
• They are holding a joint educational meeting which aims to bring together patients, specialists and other healthcare professionals who deal with various aspects of the porphyrias to increase awareness and understanding.
• They will also be providing a tour of the Clinical Biochemistry Porphyrin Laboratory and the Photobiology Unit for patients and their families to show them aspects of the porphyria diagnostic and research work we carry out at Hope Hospital .
• For further information contact: Dr Felicity Stewart, Department of Clinical Biochemistry, Salford Royal Hospitals NHS Trust ( Hope Hospital ). Tel No 0161 206 4961 or e-mail felicity.stewart@srht.nhs.uk .
Newsletter, April 2005
June 2005
We have recently circulated our latest newsletter to our members. You can download a copy of it here. (a pdf file, 350kB in size, so it will take several minutes to download via a modem.)
You will need Acrobat reader to view it. If you do not have acrobat reader, follow this link to download it onto your computer.
Open committee meeting
April/June 2005
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.
Climb Conference, 16th April
March 2004
One of the organisations which helped the BPA start was Climb - Children living with metabolic diseases.
Climb are holding a national conference in Sheffield , on Saturday 16th April (9.30am to 4.30pm ).
It includes several sessions of particular interest to people with porphyria.
Dr Mike Badminton is giving a talk on light sensitivity problems with porphyrias.
Dr Maureen Fox is giving a talk on Genetic services for metabolic diseases (like porphyria). Dr Fox is lead scientist for the UK Genetic testing network.
Prof. Stuart Tanner is giving a talk on "Getting the Orphan drug you need: focus on SID and AIP".
They are organising a day trip for children, so parents can attend the conference.
Please register by contacting climb on 0870 7700 325, or email Lesley Greene at lesley@climb.org.uk , or write to Chris Owen-Roberts, Conference Registrar, Climb, Climb Building, 176 Nantwich Road, Crewe, CW2 6BG,
For more information on the conference, see: http://www.climb.org.uk/Conferences/Sheffield2005.htm ,
Newsletter, December 2004
December 2004
We have recently circulated our latest newsletter to our members. You can download a copy of it here. (a pdf file, 650kB in size, so it will take several minutes to download via a modem.)
You will need Acrobat reader to view it. If you do not have acrobat reader, follow this link to download it onto your computer.
Open committee meeting
Jan./March 2005
The committee meeting of the BPA was on 5th March in Sheffield at 1.30pm, until about 4.30pm, and held at:
Springwater Catholic Community Centre,
Springwater Road,
Hackenthorpe,
Sheffield, S12 4HJ.This is open to all BPA members and their families.
This will give you the opportunity to see how the committee works and meet other porphyria patients.
In addition we are having a fund raising event beginning at 7pm to finish at 10 or 10.15 pm at the same venue, and we cordially invite you to attend, with as many family and friends as you can persuade!
In the evening, we aim to do a quiz, raffle etc, with a bar, tea and coffee available too. Some snacks will be available for those who would like a nibble. We would be grateful for your support if at all possible.
Tickets for the Quiz Night are £3.50 and can be obtained from our secretary, at:
18 Crescent End,
Thurcroft,
Rotherham, S66 9 LS .Please make cheques out to "The British Porphyria Association",
AGM, 2004
November 2004
The AGM of the British Porphyria Association was held on Sunday 24th October 2004 at Shirley Methodist Church , Birmingham .
There is a considerable change this year to the committee of the BPA, so we voted in the new committee.
John Chamberlayne (chair@porphyria.org.uk) was voted as the new chairman; and
Leigh Drake (secretary@porphyria.org.uk) as the new correspondence secretary.We also elected the following officers, unopposed:
Ann Newton (treasurer@porphyria.org.uk) as Treasurer,
Kirstine Chamberlayne as minutes secretary,
Sarah Clark as PR & marketing, and
Karen Harris to remain manning the help-line.It was announced that subscriptions would be collected from all members for the year at the beginning of each year. All members will be receiving a letter in January.
There was discussion regarding getting one's GP to refer porphyria patients on to specialists.
We were pleased to welcome Dr Alex Holme, who is currently working on research into liver disease in EPP patients. He gave an interesting talk about his research. Following that we presented him with a cheque for £2000 towards his research.
Following the formal AGM there were informal discussions and a chance to talk to other members.
Notice of AGM, 2004
October 2004
Date: Sunday 24th October 2004
Time: 2pm - 5.30pm
Place: Shirley Methodist Church , Birmingham
Shirley is on the eastern edge of Solihull , about 5 miles south of central Birmingham .
The church is on the main A34 into Birmingham , 10 minutes - 2½ miles - north from junction 4 of the M42. It is on the is on the right hand side of the A34 (Stratford Road) as you come up from the M42, immediately beyond Solihull Road. A car park is behind the church and is accessed via Solihull Road.
We will be pleased to welcome Dr Alex Holme, who is currently working on research into liver disease in EPP patients. He will give a short talk about his research.
There is a considerable change this year to the committee of the BPA, so we will be voting in the new committee. Come along and meet the new committee members.
Following the formal AGM there will be informal discussions and a chance to talk to other members.
