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 Just Giving or cheques should be sent, with details of your event, to The Treasurer, British Porphyria Association, Rothlea House, 7-8 Quarry Lane, Butterknowle, Bishop Auckland, DL13 5LL.