The British Porphyria Association (BPA) was established in 1999 by a group of patients and relatives who had experienced isolation and difficulties due to their diagnosis, and had found there to be a general lack of understanding and assistance available. The BPA became a registered charity in 2001 and is run by a committee of volunteers.
We usually have one or two open days / conferences a year. At these, we have talks by medical experts in porphyria and by patients; it is also a chance to meet and talk to other patients with porphyria. Our next one is our Autumn Conference and AGM, which will be held in Cardiff on 7th October 2017 with the support of Dr Mike Badminton and his team at the University Hospital of Wales. The exact location is still to be confirmed, as is the programme, but if you and your family may be interested in attending, please let us know: email@example.com or 0300 30 200 30. Add the date to your diary now.
This year, there is also an International Porphyria Patient Meeting on 25th June 2017, which will be held in the beautiful city of Bordeaux, France. The French patient organisation is working very hard to develop an interesting conference for both the acute and cutaneous porphyrias. Further details will be announced in our Spring newsletter, but, if you may be interested in attending, please keep an eye out, as we will post updates once available.
What does the BPA aim to do?
The Association aims to reach out to as many people as possible in order to improve the understanding of this condition, including:
- patients and relatives
- doctors and medical staff
- hospitals and research establishments
The porphyrias are a group of rare conditions and are often portrayed in a dismal light. Although the disorders can in some cases be very severe, there are many reasons to be optimistic and with the right information, many sufferers can live absolutely normal lives. Early diagnosis is vital if we are to improve the quality of life for those affected by it.
- The BPA’s primary aim is to improve understanding of the condition, raising awareness and ensuring that the portrayal is always accurate.
- The BPA raises funds in order to educate patients and their families about their condition.
- The BPA aims to provide an emotional support system for sufferers and their families and provides contacts with doctors and specialists.
- The BPA aims to facilitate understanding for doctors and other healthcare professionals.
- The BPA raises funding for new research into the field of porphyria and encourages new research projects.
Porphyria is pronounced similarly all over Europe, but the spelling varies considerably: porfiria, porfyrier, porfyria and porphiria.
Videos on EPP from the US – thank you NBC/Dateline
Please find below a couple of links to a really interesting documentary on EPP – this was aired in the states on NBC a few weeks ago… After speaking with the producer, he advised that he would get the segment uploaded onto a vimeo channel. Since then, it also appears to be on YouTube. It is a very interesting watch for anyone with EPP or for anyone who supports someone with EPP… The BPA would love to be able to arrange some form of summer camp/event/holiday exchange for children with EPP – and would love to model it on the Camp Sundown provided in the US – let’s hope that this is something we can do in the not too distant future. Hope you enjoy viewing the programme: https://vimeo.com/131585885 https://www.youtube.com/watch?v=qkdEfxXVlGg