Past events

Our Autumn Conference and AGM will be held at the Holiday Inn Peterborough West on Saturday 1^st 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.

Our Open Day will be held on Friday 8^th 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.

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.

The 4^th 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.

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.