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

Past events

Autumn Conference and AGM 2016 – Peterborough – 1 October

Our Autumn Conference and AGM will be held at the Holiday Inn Peterborough West on Saturday 1st October 2016 (10am to 4pm), with the support of Dr Stein and the team from Kings College Hospital London. Again, 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 2015 events, we expect places to fill quickly. Please forward the names of anyone wishing to attend with you to: sue.burrell@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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Open day 2016 – Salford

Our Open Day will be held on Friday 8th July 2016 (10am to 4pm) at Salford Royal Hospital. We will have some updates on developments with regards to access to SCENESSE (a potential treatment for EPP) and the Alnylam research (a potential treatment for the acutes), as well as talks from specialists and patient experience talks from EPP and AIP patients. We are also excited to be trialling a slightly different structure for the meeting. In addition to these structured talks, we also plan to have some ‘table’ style discussion groups to focus on different aspects, such as issues affecting children and teenagers, the various transition stages for the different porphyrias, as well as tables for patients and those providing support to patients, to name a few!

Please let us know if you would be interested in attending as, based on the popularity of our 2015 events, we expect places to fill quickly. Please forward the names of anyone wishing to attend with you to: sue.burrell@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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Custom Van Show: 12-13 September 2015

For the second year running, Ray Lancaster and Jenny Coombs are organising the Revolution Custom & Classic Van Club 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). £1 entry at the gate. £5 per day for vans showing, but not camping. For an overnight stay at the camping/caravan site, bookings are £14 a pitch or £16 with electric hook-up. Bookings are to be made directly with the venue, quoting ref: BPA. 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 Patient Day in Düsseldorf, Germany, on Sunday 13 September

The 4th International Patient Day will be held on Sunday 13 September at the City Hostel in Düsseldorf, Germany. The main theme of the day will be new therapies for the cutaneous and acute porphyrias.

The main International Porphyrins and Porphyrias Conference will be held on the following three days from Monday 14 to Wednesday 16 September. Although the main conference is aimed at medical personnel, the BPA plan to have a representative at  the Scientific Conference (as well as the Patient Day), to keep us informed and then report back on any new developments or areas that may help the porphyria community in the future.

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Autumn Conference and AGM in London, on Saturday 24 October 2015

Our Autumn Conference and AGM will be hosted by Dr Sarkany, who is one of the most experienced dermatologists on EPP and other skin porphyrias in the UK.  It will be at Guys and St Thomas’ York Road Education Centre in central London (near Waterloo Station) on Saturday 24 October. The meeting will start with refreshments and registration at 10.30am for an 11am start, a light lunch will be provided in the middle of the programme and refreshments will be served to finish at 3pm.

We are still planning this event with the help of Dr Sarkany, who will also be a speaker. The BPA will hold a brief AGM and the following speakers will be in attendance as well as Dr Sarkany: a representative from Clinuvel Pharmaceuticals Ltd., a representative from Alnylam Pharmaceuticals, a window film company and two porphyria patients.

We are looking into options that will help to create access to all of our members, whether in the form of a Live Twitter Feed or through videoing the speakers.

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Open Day in Leeds, on Friday 29 May 2015

On Friday 29 May we will be holding our Open Day in Leeds. The meeting is free to attend and will be held at Devonshire Hall which is one of the University of Leeds’ city centre campuses. The programme will start with registration and refreshments at 10am, for a 10.30am start, and will finish with refreshments at around 4pm, lunch will also be provided.

The programme is coming together nicely and we have already confirmed the following speakers: Dr Stein (one of the lead acute specialists who deals with  some of the most severe acute patients); a consultant Clinical Biochemist from the Specialist Laboratories in Leeds; also a representative from Clinuvel Pharmaceuticals Ltd.; a representative from Alnylam Pharmaceuticals; a window film company and a patient giving her experience. In addition to these talks, we are planning on having a breakout area for any younger people who attend, with some games and a couple of films to watch. The day will conclude with a question and answer session, and time for informal chats with other porphyria patients and their families.

Would you like to pose any questions to the experts?

In an attempt to really meet our members’ needs, all of the speakers have agreed that we can pose questions before the meeting, and they will do their best to answer these questions (time permitting) throughout the day. Please send any questions that you have, in advance, to sue.burrell@porphyria.org.uk.

Live Twitter Feed for the Open Day in Leeds

We have been looking into ways to make our meetings more interactive and accessible, after a suggestion on Facebook for the meetings to be recorded and then either streamed live or uploaded online later. This is something we would love to look into for future events, but feel that we would need a little more time to do this properly.

In an attempt to increase accessibility and interaction we are pleased to announce that Jo Taylor has volunteered to hold a ‘Live Twitter Feed’, for questions and comments that can be posed to the speakers on the day. We will endeavour to answer as many questions as possible, but as this is the first time that we’ll be trialling this technology, please be patient if for any reason we have any teething problems on the day!

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New Job Role for the BPA

The British Porphyria Association is employing a part-time administrator. We are looking for someone who will work on a contract (self-employed) basis from home, for an average of six hours a week.

The successful applicant will either have knowledge of the porphyrias, or be willing and able to rapidly learn about the conditions. The applicant will need to be self-driven, with a personable and supportive demeanour while also having excellent organisational and administrative skills. They will also need to be a confident computer user with excellent knowledge of Windows-based applications (specifically: Outlook, Word, Excel and Access).

The new BPA administrator will be responsible for a variety of tasks, including: helping to answer member queries on porphyria (mainly email); monitoring and contributing to Facebook; attending meetings on the BPA’s behalf; sourcing sponsorship and merchandise; as well as other administrative duties to push the charity forward.

The deadline for applications was 31 December 2014.

Sue Burrell has been appointed

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Ride London-Surrey 100 – 10 August 2014

We are pleased to announce that we have filled our two places for the annual Ride London-Surrey 100.  Ian Burrell and Dougal Betts will be training hard over the coming months in order to be fully prepared to ride 100 miles in one day on Sunday 10 August 2014.  They will also be working hard to generate their sponsorship goal of £1,000 for the BPA. You can follow their training and journey by looking at their JustGiving page: www.justgiving.com/Ian-and-Dougal where you can also sponsor them if you would like.

 

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Custom Van Show: Weekend 13/14 September 2014

Ray Lancaster, one of our loyal BPA members and porphyria sufferers, has organised the Revolution Custom & Classic Van Club Show in Skegness, to raise awareness and funds for the BPA. Van owners and enthusiasts will be coming from all over the country to show off their vans: self-builds, work vans, pick-ups, works in progress, and characterful wrecks. There will be entertainment and competitions (for adults and kids), including blind driving!

The event will be held at the Pine Trees Leisure Park, Croft Bank, Skegness Lincolnshire, PE24 4RE (Tel: 01754 762949). For an overnight stay at the camping/caravan site, bookings are £12 a pitch or £14 with electric hook-up. Bookings are to be made directly with the venue, quoting ref: BPA.

If successful, Ray hopes the event will be repeated annually. Additionally, anyone who is interested in helping with the event/a stall can contact Ray (details below) or Liz Gill on 0300 30 200 30.

If any business or individual has a raffle prize that they would like to donate, then please let us know.

For more information, or to buy raffle tickets please contact Ray Lancaster on 07799 392 771 or magicoazulcc@yahoo.co.uk.

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Autumn Conference and AGM – 6 September 2014

Our BPA Autumn Conference and AGM will be held in the Mayo Building at Salford Royal Hospital, Salford on Saturday 6 September 2014 and will run from 10:45am to 3:15pm. The meeting is free to attend.

The programme will start with registration and refreshments at 10:45am, for an 11:00am start. An hour-long lunch break will also be provided to allow ample opportunities to informally meet and talk with other porphyria patients and their families. The meeting will finish with a final refreshment break at around 3:00 to 3:15pm.

There will be a clinical talk from Professor Felicity Stewart, a talk on living with EPP pain from a mother and her son, a talk from a patient with AIP, as well as plenty of formal and informal opportunities to ask questions with clinicians or to talk with other people with porphyria. In addition, Joanne Osman and Liz Gaskell from the Salford Royal Photobiology Unit will be available over the lunchtime period to talk to members and advise on sun protection.

If you would like to attend, please contact us for more information and directions: 0300 30 200 30 or helpline@porphyria.org.uk.  

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