About BIPNET

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Who are BIPNET?

The British and Irish Porphyria Network (BIPNET) was established in 2009 by specialist clinicians and scientists who had previously met informally for many years as the Porphyria Interest Group.

Our core members include those providing comprehensive diagnostic and clinical services in five specialist porphyria centres in the British Isles who are recognised by the European Porphyria Network (EPNET) and others with a substantial clinical interest in acute and/ or cutaneous porphyria.

 

What does BIPNET do?

We hold an annual educational meeting to which guest speakers, overseas colleagues and patients' representatives are invited. A number of our members are active in EPNET working groups providing an important international link and regular feedback to BIPNET.


How do we contribute to improving care for porphyria patients?

BIPNET meetings include a closed multi-disciplinary session that enables confidential discussion of complex porphyria cases. This is an important way in which we avoid the problem of professional isolation for those managing patients with porphyrias, which are all rare conditions. BIPNET can represent expert opinion, disseminate best practice and influence service planning and provision for our patients with porphyria.

BIPNET members are active in research and epidemiological studies, audit and other clinical research can be facilitated through the network.

 

Patient and public involvement

BIPNET has strong links with the patients' support group and charity, the British Porphyria Association (BPA).  BIPNET is a registered stakeholder in Rare Disease UK.

A series of patient and public open events has been held in our Porphyria specialist centres. BPA members attend the open sessions of BIPNET meetings and have input into production and review of our best practice guidelines. BIPNET members provide expert advice for production of patient information leaflets.

 

Financial support

BIPNET is an independent professional organisation and has no source of income.  We are grateful to Orphan Europe who provided financial support to cover set-up costs for this website and also support the cost of venue hire and refreshments at BIPNET meetings.

 

Acknowledgements

BIPNET would like to thank Dr Darren Powell (Clinical Biochemist, Salford Royal NHS Foundation Trust) who designed and set up this website .

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