helpline: 0300 30 200 30
helpline@porphyria.org.uk

Webmaster

Autumn Conference and AGM 2010

Our autumn conference, including our brief AGM, was held this year in Cardiff, at the University Hospital of Wales.  It was on Saturday, 25th September, 2010.
It included talks by porphyria experts from the Hospital.  There was also a talk by one of our members with EPP, who is also an expert in publicity;  and a question and answer session with the BPA committee and medical experts.

The programme for the day can be downloaded here

Instructions for getting there can be downloaded here;  and a map of the hospital, and surrounding area is here.

 

Read more

Charity walk

One of our members organised a sponsored 10 km walk for the BPA. It was held near Gravesend in Kent, on 16th May, 2010.

She is organising another sponsored 10 km walk in 2011.   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.

Read more

Our first meeting in Scotland

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.

Read more

Autumn Conference and AGM 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.

 

Read more

Committee meeting

We had a committee meeting in March, 2009.  Any members are welcome to come along to any of these meetings, please see our events page for details of upcoming events.

Read more