Blog

The Darnley Trail is a 10km circular walk through woodland and meadows in the Kent countryside. Our first walk in 2010 raised over £700 for the British Porphyria Association. This year we aim to raise £1000.

The walk starts from Shorne Woods Country Park, Brewers Road Gravesend DA12 3HX, which is easily accessible and signposted from the A2. Toilets and refreshments are available at the Visitor Centre. There is plenty of car parking, however, there is a small charge.

Registration is from 10.00 – 10.30am, next to the children’s adventure playground.

All are welcome, walking/running clubs, scouts, guides, rangers, school teams, work colleagues. Entry fees are just £6pp.

This walk is not suitable for pushchairs or wheelchair users, however, they would be welcome to join the event by following a shorter route through the country park.

From here, you can download sponsorship forms and further information, or you can get further information by sending an SAE to The BPA Darnley Trail Challenge, 14 Mollison Rise, Gravesend, Kent. DA12 4QJ.

If you require more information call our helpline on: 01474 369231

We are having a hospital open day at Salford Royal Hospital (traditionally known as Hope Hospital) on Saturday  23rd  June, 2012. The hospital is a few miles west of the centre of Manchester, easily reached by bus and tram.

It will be a joint educational meeting for patients, specialists and other healthcare professionals who deal with various aspects of the porphyrias to increase awareness and understanding. It will include talks from clinicians and people with porphyria.

After lunch (provided) we will split into two groups – one with patients with acute porphyrias (AIP, VP and HCP), and the other with those with skin porphyrias (EPP, PCT, etc.). There will be a tour of the pathology laboratories where porphyria patient samples are tested, to confirm their porphyria, find the type of porphyria, or confirm that they are having an attack. Also the skin porphyria group will discuss advice on protecting the skin from light

It will start at about 10.30 am, and finish mid-afternoon.

If you want to come, let us know.  We need to know names and numbers both for catering, and also for hospital security.

It will start at about 10.30 am, and finish mid-afternoon.

After lunch (provided) we will split into two groups – one with patients with acute porphyrias (AIP, VP and HCP), and the other with those with skin porphyrias (EPP, PCT, etc.). There will be a tour of the pathology laboratories where porphyria patient samples are tested, to confirm their porphyria, find the type of porphyria, or confirm that they are having an attack. Also the skin porphyria group will discuss advice on protecting the skin from light

29th May – 4th June 2011
National Porphyria Week was initiated several years ago by one of our ‘sister’ organisations in America and we decided that it would be a good way for the British Porphyria Association to help raise awareness of ALL the Porphyrias in the British Isles. More worldwide patient associations are now joining in and making this an INTERNATIONAL week of awareness.

We will endeavour to highlight the plight of those struggling with this condition using the media, our member’s personal stories, fund raising events, conferences, and any other means that we can.

Members like YOU, can help us to do this! You can download here our standard press release and ask your local newspapers to run the story during awareness week. Or why not join us in our ‘OPEN HOUSE’ event.

‘OPEN HOUSE’ will be our major awareness week event and is very simple to do. Invite your friends, family, neighbours or work colleagues to your house on any day, during the week for tea/coffee/cakes/biscuits/scones/cheese/wine, whatever you are prepared to provide. The idea of ‘OPEN HOUSE’ is that rather than have a set time for visitors, your guests are invited to arrive anytime between 10am and 8pm. This should allow more people to be involved than if you restrict the time to a morning or evening event. It also means that you are more likely to have smaller groups throughout the day rather than one large group to cater for. You ask your guests to make a donation to the BPA in lieu of your hospitality. You could also run a tombola, or guess the weight of the cake, or some other fun event at the same time. The list is restricted, just by your imagination!

Invitations and posters for your event, which you can personalise, can be downloaded here.

Why not take some photos of your event and guests and send them to us for our events photo gallery?

Money raised can be paid through our Just Giving website: www.justgiving.com/britishporphyriaassoc or cheques should be sent, with details of your event to Treasurer, British Porphyria Association, 11 Blakehill Terrace, Undercliffe, Bradford, West Yorks, BD2 3JS.

The BPA is holding its AGM and Autumn Conference in Shirley, Birmingham, on Saturday 10th September, 2011.

It is at Shirley Methodist Church, about 3 miles south of the centre of Birmingham, on the A34. It is  2 ½ miles (10 minutes) north from junction 4 of the M42. There is a car park behind, and there are buses which go past the church.

It will start at 2pm, with a brief AGM, and then have talks on porphyria by medical experts and patients.

It will include a buffet tea, and a chance to talk to others with porphyria.

If you would like to come, please let us know, in one of the usual ways (letter, phone, email or online) to help with catering numbers.