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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 .

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”

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.

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.

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