Webmaster

We had another open day this year, organised by Dr Julian Barth and Keith Allen at Leeds.

The open day was at Britannia House, Britannia Road, Morley, Leeds, LS27 0DQ,  on Sunday 1st June 2008.

The programme was
10.30 Coffee
11.00 am.    Welcome Keith Allen, Consultant Clinical Scientist.
11.15 am.    John Chamberlayne, News/update on the BPA and discussion of local groups
11.45 am.    The AIP Study, Dr Helen Murphy, Liverpool
12.15 pm.    Cutaneous Porphyria: Dermatological Aspects,  (Speaker will be a Dermatologist)
12.45 pm.    Role of the Laboratory: Dr Elizabeth Fox, Biochemist, Leeds
1.15 pm.      Lunch followed by Laboratory tour (in groups)
3.15 pm.      Question & Answer Session
4.00 pm.      End

Lunch/Coffee was provided by courtesy of Orphan Europe UK Ltd.

Previous open days have proved to be very popular, and this was equally interesting.

We had an open committee meeting in May. It included  a talk by Dr Elwyn Elias on liver transplants for AIP patients.
This was in Shirley, south Birmingham at 2.30 on Saturday May 10th.

We provided tea, over which you can talk to the committee and other members.  Again, please let us know if you intend to come.

We had a half-day conference  in Liverpool, on 27th September.   It will start at 2.00pm.  and be at Liverpool Women’s Hospital, Crown St, Liverpool,  L8 7SS.

After a short AGM,
we will have a talk by Ms Sara Elgott, on Haem Arginate,
and one by  Dr Helen Murphy, who is doing research into AIP at Liverpool.

We will then have a talk by Dr Felicity Stewart of Salford Royal (Hope) Hospital
on “Developing a patient-centred porphyria service”

This will be followed by a question and answer session.

We will then provide a buffet tea, when you can talk to other porphyria patients, to the committee, and to the medical experts.

Can we warn you of an advert for a “guaranteed porphyria treatment” that has appeared on the internet. It is for “phyrotab”.

Our experts advise us that it has no benefit. Worryingly, the medication appears to contain a long list of plant extracts in the ingredients, which may actually put porphyria patients at risk. Even more worryingly, they appear to be marketing this same tablet for a variety of other conditions.

In the summer of 2006 many of our members completed a questionnaire we sent them.  The results were summarised the following year, and presented to porphyria medical experts, and at BPA meetings.  A report of the results can be downloaded here.