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.