Porphyria Update – for Patients and Professionals

Thursday 20 April, Garden Court Victoria Junction Hotel, Green Point

This registration is separate to the UMHM main symposium. UMHM Registered delegates can register via their online link and add this programme to their record (if not attending the Groot Constantia Tour taking place at the same time).

NEW delegates attending these sessions only can register using the following link: Porphyria Update: Registration link

You can register for one session or both sessions. Please indicate if you are Virtual or in-person. All in-persons will receive lunch and refreshments. No shows will be charged a R500 fee to cover catering costs. Patients and professionals will use the same link to register.

CPD Accreditation: This programme has been accredited with 2 points for the Porphyria 101 and 2 points for the Refresher symposium. You will be required to sign the attendance register at the beginning of each session to qualify.

Programme
*Porphyria 101 – disease education for South African patients* [The session will be offered hybrid via Zoom and in-person, free of charge, and pre-registration will be required], click here to register Chair: Wendy Spearman – University of Cape Town -GSH
10:30 – 10:40	Welcome & Introduction & Acknowledgement of sponsors, (Kristen Wheeden – United Porphyrias Association; Peter Meissner – University of Cape Town)
10:45 – 11:00	Porphyrins and Porphyria – a biological intro (Peter Meissner – UCT)
11:00 – 11:20	How does Porphyria affect me – a clinical intro (Richard Hift – UKZN)
11:20 – 11:30	Porphyria in the South African context (Peter Meissner – UCT)
11:30 – 12:00	Treatment and lifestyle changes if I have porphyria – acute attacks and skin photosensitivity – avoiding triggers (Mark Sonderup – UCT-GSH)
12:00 – 12:10	Global and local resources for patients – (Kristen Wheeden, United Porphyrias Association, USA) and Introducing the SA Porphyria Foundation (Aletta Longari)
12:10 – 13:00	[Panel answering open Q&A] Panel – the above speakers and joined by Janneke Langendonk, Netherlands; Eliane Sardh, Sweden; Bruce Wang, USA.
13:00 – 14:00	*Meet the Experts (Lunch)* [Free of charge, Professionals and Patients welcome to join. In person gathering only. Pre-registration required] Mingle, get some food and pose questions to our international and local porphyria experts (Janneke Langendonk, Netherlands; Eliane Sardh, Sweden; Bruce Wang, USA; Pauline Harper, Sweden)
*Porphyria Refresher – disease and diagnostic education* [Aimed at professionals, patients welcome to listen in]. [The session will be offered hybrid via Zoom and in-person, free of charge, and pre-registration will be required] [CPD points on offer]
14:00 – 14:15	Introduction, including the SA context (Peter Meissner, UCT)
14:15 – 14:35	Getting the diagnosis right (Pauline Harper, Sweden / Pete Meissner, SA) [Includes Q&A]
14:45 – 15:05	Current approaches to treating the acute porphyric attack (Eliane Sardh, Sweden) [Includes Q&A]
15:05 – 15:25	Current approaches to treating the skin disease of the porphyrias (Janneke Langendonk, Netherlands)] [Include Q&A]
15:25- 15:45	Emerging therapies in the porphyrias (Bruce Wang, USA) [Include Q&A]
15:45 – 16:00	Closure, further questions

Sponsored by: