RESEARCH PARTICIPATION OPPORTUNITY
Do you have EPP or XLP and would like to get involved in increasing understanding of your condition?
PORTAL THERAPEUTICS want to better understand how porphyria affects people through an observational study taking place at study sites in the UK! The study is called stEPP and is designed to understand more about EPP/XLP! No medication is taken in an observational study. The following sites are open for this research in the UK & Ireland (as at May 2026):
- University Hospital of Wales, Cardiff
- Ninewells Hospital, Dundee
- Salford Royal Hospital, Salford
- Guy’s Hospital, London
NCT07567131 | Observational Study of Adults and Adolescents With Erythropoietic Protoporphyria (EPP) and X-linked Porphyria (XLP) | ClinicalTrials.gov
Learn more: Please contact your specialist about the stEPP study. You can also give the BPA a call on 0300 30 200 30 to learn more about the study and how to take part. Or email Portal directly at patientadvocacy@gondolabio.com.
Coming soon: Portal Therapeutics are aiming to start the next phase of their research (which will include a study drug or placebo) in the coming months. Patients interested in taking part in either study should speak with their porphyria specialist (based at one of the main specialist centres). If you need help to know whether you are under a specialist team, or would like support in asking for a referral, please let us know helpline@porphyria.org.uk.
