John

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.

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!

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

Michael Lake and 2 of his friends, Alex and Stephen, are raising money for the BPA.  His fiancée, Ruth suffers severely from AIP.

They will be running in the Hellrunner down south;  it’s a half marathon distance running through mud, bogs, freezing cold chest deep water and over hills! It’s a hellish course, hence the name but they are very determined men and I have no doubt they will complete the course.

To donate, visit their JustGiving website – at www.justgiving.com/MichaelInHellDownSouth.

They will be running it on Saturday 4th January (this weekend). They have already raised nearly £1,000 through Just Giving, and hopefully they may even get a few more donations before Saturday. All the money will be donated to the BPA to help continue the work wedo. Ruth says she has often used our website to educate herself and others, including health professional, about hercondition.