Target audience:

Clinicians from all backgrounds who may potentially encounter cases, laboratory scientists and Pathologists involved in diagnostic testing, patients and anybody with an interest in knowing more about Porphyria.

Areas to be covered:

General background and clinical situations where it is important to think about Porphyria. Also diagnostic testing, including genotyping, quality assurance and where assay developments are occurring. Both patient and clinician perspectives on management and challenges faced, together with insight into new treatment advances.

Expected outcomes:

To understand the patho-physiology of Porphyria and know when to suspect it.

To know how to exclude porphyria in an acute situation and how to proceed with diagnostic testing when a case is suspected. To have a greater understanding of all perspectives and to promote greater cooperation at the laboratory-clinician interface.

PROGRAM

09:30 – 09:40 – Introduction – Chris Florkowski/Peter Graham

09:40– 10:10 – Diagnosing porphyria, the role of the laboratory – Janine Grant

10:10 – 10:40 – Models of care – Gayle Ross

10:40 – 11:00 Morning Tea

11:00 – 11:20 – Porphyrins and Genetics – Jole Bojovic

11:20 – 11:40 – Cases for comment. How it works. – Joel Smith

11:40 – 12:00 – A challenging case (dual porphyria) – Chris Florkowski

12:00 – 12:20 – Open Discussion

12:20 – 13:00 Lunch

13:00 – 13:20 – How good are our assays? Feedback from RCPAQAP – Virginia Cronin

13:20 – 13:40 – Where do our assays need to be? Ongoing developments – Chris Sies

13:40 – 15:00 – A patient’s perspective of Porphyria – Patient TBC

15:00 – 15:20 Afternoon tea

15:20 – 15:50 – A copro-porphyria family. Challenges and progress – Cindy Towns

15:50 – 16:20 – New developments in treatment. Ongoing clinical trials. – Peter Stewart

16:20 – 16:30 Open discussion & Conclusion

NETWORKING DRINKS