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Custom Van Show: 9th-10th September 2017

January 23, 2017 Elizabeth Fundraising and awareness

For the fourth year running, Ray Lancaster and Jenny Coombs are organising the Revolution Custom & Classic Van Show in Skegness, to raise funds for the BPA. Van owners and enthusiasts will be coming from all over the country to show off their custom vans. There will be entertainment and competitions for adults and kids! Starts at 10am each day.

The event will be held at the Pine Trees Leisure Park, Croft Bank, Skegness Lincolnshire, PE24 4RE (Tel: 01754 762949). http://www.pinetreesholidays.co.uk.

Anyone interested in helping with the event/a stall can contact Ray on 07799 392 771 or magicoazulcc@yahoo.co.uk. If any business or individual has a raffle prize that they would like to donate, then please let Ray know.

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International Porphyria Awareness Week (IPAW)

January 18, 2017 Elizabeth Fundraising and awareness

22 April 2017 – 29th April 2017

After discussions with the American Porphyria Foundation (APF) and the International Porphyria Patients Network (IPPN), we are joining them in holding an International Porphyria Awareness Week (IPAW) from 22 to 29 April 2017.  We are planning on suggesting a number of fundraising and awareness initiatives that you might like to become involved in. More details of these will be circulated in early 2017 via our website and Facebook page, as they become available.

We feel this will help strengthen the impact that we can have, not only on a local level, but on a global level too.

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

Members like YOU, can help us to do this! If you have any ideas for awareness, publicity or fundraising that you would like to explore with the BPA, please do not hesitate to get in touch.

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.

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2017 Autumn Conference and AGM: Cardiff

January 18, 2017 Elizabeth Conferences and events

Our 2017 Autumn Conference and AGM will be held at the Holiday Inn Cardiff North M4, J32 on Saturday 7th October 2017 (9.30 am to 4.15 pm), with the support of Dr Badminton and the team from the University Hospital of Wales, Cardiff. As always, we will have updates on Clinuvel and Alnylam as well as various other talks from doctors, nurses and patients about living with porphyria. There will be plenty of opportunities to talk with others affected by porphyria, as we plan to group sessions together to allow a specific cutaneous section and an acute section, meaning that people will be able to use a breakout room for informal discussions, instead of attending talks that may not be as relevant to them.

Please let us know if you would be interested in attending as, based on the popularity of our 2016 events, we expect places to fill quickly. Please forward the names of anyone wishing to attend with you to: liz.gill@porphyria.org.uk or call 0300 30 200 30 to confirm your attendance.  The BPA will send further information to those interested a few weeks before the actual event.

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