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Autumn Conference and AGM 2010
Jan 2010
Our autumn conference, including our brief AGM, will be held next year in Cardiff, at the University Hospital of Wales. It will be on Saturday, 25th September, 2010, starting at 2pm.
It will include talks by porphyria experts from the Hospital. More details will be in our next newsletter.
Photos Competition for calendar
Mar 2010
As announced in the last newsletter, we are holding a competition for photos for a calendar we are planning to produce for next year. We haven’t had a great number of entries (apart from snow ones! ), so do send yours in.
The subject is weather.
The deadline has been changed to the end of June.You may submit up to 6 photos along with your name, age and contact details.
Send them high quality prints, or a disk to Karen Harris, 14 Mollison Rise, Gravesend, Kent. DA12 4QJ; or email high quality jpegs to photos@porphyria.org.uk.
Donating on-line
Jan 2010
You can now pay your subscriptions, or donate to the BPA, via JustGiving: www.justgiving.com
type "porphyria" into the
Click on this button to go there:
or this one to create your own page
Meeting in Cambridge
Jan 2010
We are looking forward to having a conference at Sydney Sussex College in Cambridge on 12th June, 2010. There will be talks by porphyria experts from Addenbrookes Hospital, a question and answer session, and a chance to meet both the experts and other porphyria sufferers. Details will be sent out nearer the time.
Charity Walk
One of our members is organising a sponsored 10 km walk for the BPA. It is being held near Gravesend in Kent, on 16th May, 2010. Please either join in the walk, or sponsor those on the walk. For more information, email nordicwalking@bodywiseonline.co.uk
More information is available here. A poster on the walk can is available here, and also an entry form and sponsorship form.
Autumn Conference and AGM 2009
Jan/Nov 2009
We had a good half-day conference in London, on Saturday 3rd October. It was at King's College Hospital, Denmark Hill, London SE5 9RS , in the Weston Education Centre (Bill Whimster Suite).
We had a 1.30 registration, for a 2.00pm. start.After a short AGM, we had talks by Dr Bob Sarkany, Dr Joanne Marsden and Dr David Rees.
It included a question and answer session, and then members were able to talk to other porphyria patients, to the committee, and to the medical experts, over refreshments.
Our first meeting in Scotland
Mar/Nov 2009
In June we had our first main meeting in Scotland, at Ninewells hospital, in Dundee, on Saturday 13th June. We had talks by Scottish porphyria experts, and a tour of the labs where porphyria tests are done for Scotland.
Report on Questionnaire
Mar 2008
In the summer of 2006 many of our members completed a questionnaire we sent them. I summarised the results the following year, and presented them to porphyria medical experts, and at BPA meetings. I have finally completed a report of the results, which can be downloaded here.
Newsletter, Dec 2009
Mar 2008
We have circulated our November newsletter to our members. You can download a copy of it here (a pdf file, 350kB in size, so it will take a couple of minutes to download via a modem.)
You can download a copy of our May 2009 newsletter here, also our November 2008, May 2008, November 2007, May 2007, December 2006, May 2006, and November 2005 newsletters.
You will need Acrobat reader to view them. If you do not have acrobat reader, follow this link to download it onto your computer.
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
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.
Committee Meeting
Jan 2009
We had a committee meeting in March, 2009. Any members are welcome to come along.
It is in Bradford, at 2pm on Saturday March 21st. Contact us if you would like to join us.
Autumn Conference and AGM 2008
June/Dec 2008
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.
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.
