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Autumn Conference and AGM 2008

We are having 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 Dr Felicity Stewart of Salford Royal (Hope) Hospital,
and one by Dr Helen Murphy, who is doing research into AIP at Liverpool.

This will be followed by a discussion on porphyria clinics,
and then 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.

Hospital Open Day

April/June 2008

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.

Porphyria Awareness Day

Apr 2008

We are celebrating 1st June as Porphyria Awareness day.

We plan to raise the profile of porphyria via the media on this day.

You can download a poster on Porphyria, or a headed poster for you own events.

Open Committee Meeting

April/June 2008

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.

Warning of Scam

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.

Purchasing on the web - and helping BPA

February 2005

The British Porphyria Association has a web purchasing portal. If you go through it, then BPA gets commission on what you buy. You just buy from the normal web sites as usual, at the normal prices, but BPA gets the commission.

The address is http://buy.at/BPA

It leads to about 80 web purchasing sites, including Amazon, Tescos, Asda, M&S, LoveFilm, HMV, CD-wow, Expedia, Travelcare, Carphone warehouse, Teleflorist....

Please use it.

New Leaflets

Dec 2006

We have now produced five leaflets.

One is a general explanation of porphyria. This would be suitable to give to doctors and hospital staff on the subject.

The second gives a quick introduction to porphyria, followed by information about the purpose of BPA

A third is on skin porphyrias, and a forth on AIP.

We also have a leaflet on the use of drugs with the acute porphyrias. This goes with a copy of the safe drugs list.

They can be downloaded / opened here:
Porphyria introduction    :    BPA introduction :
Skin porphyrias             :    AIP
Use of Drugs         :     Safe drugs list

Newsletter, November 2007

June 2007

We have circulated our November newsletter to our members. You can download a copy of it here (a pdf file, 250kB in size, so it will take a couple of minutes to download via a modem.)

You can download a copy of our May 2007 newsletter here, December 2006 newsletter here, our May 2006 newsletter here, and 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.

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.