Don't Miss a Thing
Scientific Program
- Workshop
- Patient Day
- Sep 4th, 2022
- Sep 5th, 2022
- Sep 6th, 2022
- Sep 7th, 2022
| Pre- Congress Workshop / Regional meeting - September 3rd, 2022, Saturday | |||
| 16:00 | 16:05 | WELCOME | |
| 16:05 | 16:30 | Testing for AHP | |
| 16:30 | 16:50 | Patient case AIP - history/delayed diagnosis/ | |
| 16:50 | 17:20 | You asked we answered – discussion | |
| 17:20 | 17:40 | Coffee Break | |
| 17:40 | 18:10 | Testing for cutaneous porphyrias | |
| 18:10 | 18:30 | Patient case PCT - history/delayed diagnosis | |
| 18:30 | 19:00 | You asked we answered – discussion | |
| Pre- Congress Workshop / Regional meeting - September 4th, 2022, Sunday | |||
| 10:00 | 12:00 | Networking event | |
| 12:40 | 13:30 | Lunch | |
| 14:00 | Participation in the discussions of Patients’ Day session “Switch” Role Reversal (ROUND TABLE QUESTION/ANSWER) |
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| September 4th, 2022, Sunday | |||
| Patient Day Sofia, Bulgaria | |||
| 10:00 | 10:15 | WELCOME OPENING REMARKS and Connection bingo |
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| SESSION 1 | |||
| 10:15 | 11:15 | Overview of Porphyries News Education/Awareness Updates from Patient Organisations How patients can access the organisations, raise awareness, etc. |
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| 11:15 | 11:30 | Coffee Break | |
| SESSION 2 | |||
| 11:30 | 11:45 | Show short film - Real Patient Stories | |
| 11:45 | 12:15 | A FAMILY STORY (3 caregivers testimonial) | |
| 12:15 | 12:30 | Reminder about Porphyria Connection Bingo | |
| 12:30 | 13:45 | Lunch | |
| SESSION 3 | |||
| 14:00 | 15:00 | “Switch” - Role Reversal Dr’s ask patients (10 patients with various types of Porphyria.) (ROUND TABLE QUESTION/ANSWER) |
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| 15:00 | 15:30 | Additional Closing remarks |
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| ICPP 2021 Congress program September 4th, 2022, Sunday | |||
| SESSION 1 | |||
| 17:30 | 17:45 | WELCOME CEREMONY OPENING REMARKS CHAIRS: Sverre Sandberg (Norway) & Peter Meissner (South Africa) |
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| 17:45 | 18:00 | EPNET Presentation (Recognition of retirees/honorary members, Introduction to EPNET and role of this congress) |
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| 18:00 | 19:00 | Evidence-based Guidelines for the porphyrias: An EPNET (and all) reality check – Introduction (5 min) – Sverre Sandberg (Norway) – Methodology in establishing evidence-based guidelines (20 min) – Reem Mustafa (USA) – Results of project to develop Guidelines for treatment of the acute hepatic porphyrias (20 min) Open discussion (15 min) |
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| 19:00 | 19:30 | The relationship between basic (haem) research and the bedside – a personal perspective – Harry Dailey (USA) | |
| 19:30 | 21:00 | Welcome Reception | |
| September 5th, 2022, Monday | |||
| SESSION 2: FUNDAMENTALS OF HAEM & HAEM REGULATION 1 | |||
| 8:45 | 9:25 | CHAIRS: Amy Medlock Haem biosynthesis: Overview, latest advances and Covid-19 (30+10min) John Phyllips (USA) |
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| 9:25 | 10:10 | Selected Oral presentations (Basic haem/porphyrin science and can include Covid abstract/s if there are some- OP1 OP2 OP3 | |
| 10:10 | 10:45 | Coffee break and Poster Viewing | |
| SESSION 3: FUNDAMENTALS OF HAEM & HAEM REGULATION 2 | |||
| 10:45 | 11:25 | CHAIRS: Laurent Gouya Haem tolerance and metabolism (including transport) (30+10 min) – Iqbal Hamza (USA) |
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| 11:25 | 12:05 | ALAS1 knockout mouse liver haem repletion sans haem biosynthesis: (Im)possible mechanisms? Makiko Yasuda (USA) |
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| 12:05 | 12:50 | Selected Oral presentations (Basic haem/porphyrin science- OP4 OP5 OP6 | |
| 12:50 | 14:00 | Lunch break + Poster viewing | |
| SESSION 4: ACUTE HEPATIC PORPHYRIAS - NEW INSIGHTS & THERAPIES 1 | |||
| 14:00 | 15:15 | CHAIRS: Bruce Wang & Petro Petrides Panel input & discussion on siRNA ALAS mRNA inhibition – Givosiran update and use in the ‘real world’ – Real world experience (15 min) - Laurent Gouya (France) – Real world experience (15 min) - David Rees (UK) – Real world experience 3 (Sweden) (15 min) – Dysregulation of homocysteine homeostasis in AIP patients on haem/Givosiran treatment (15 min) - Jordi To-Figueras (Spain) Open and further panel discussin/experiance from the floor (15 min) |
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| 15:15 | 15:45 | Other Emerging therapies for AHP (featuring those with evidence of promise and including Enzyme replacement therapy using rhApoA1-PBGD (20+10min) Antonio Fontanellas (Spain) |
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| 15:45 | 16:15 | Selected oral presentations (AHP - new and emerging therapies) Selected oral presentations (Basic heme/porphyrin science OP7 OP8 (2x15 min) |
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| 16:15 | 16:30 | Coffee break | |
| 16:30 | 19:30 | SESSION 5: EPNET GENERAL MEETING Opening and welcome, Approval of Minutes GA Meeting 2019 , Executive Board report, Financial information including election of auditors, Report from Working Groups, Voting for EB 2023-24, Voting for ICPP 2024 |
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| September 6th, 2022, Tuesday | |||
| SESSION 6: CUTANEOUS PORPHYRIAS - NEW INSIGHTS AND TREATMENTS 1 | |||
| 8:45 | 10:00 | CHAIRS: Jean-Charles Deybach Panel input and discussion on New protopophyria treatments Janneke Langendonk (Netherlands) - Review of recent photoprotective and pathophysiological approaches (15 min) - Dersimegalon -MC1R agonist (15 min) - Bitopertin - limiting Gly uptake in differentiating erythrocytes (15 min) - Cimetidine for possible ALAS 2 inhibition (15 min) - Amy Dickey (USA) Open and further panel discussin/experience from the floor (15 min) |
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| 10:00 | 10:30 | PCT treatment update (20+10 min) | |
| 10:30 | 11:00 | Coffee break and Poster Viewing | |
| SESSION 7: CUTANEOUS PORPHYRIAS - NEW INSIGHTS AND TREATMENTS 2 | |||
| 11:00 | 12:30 | CHAIRS: Maria Cappellini Selected Oral presentations (Cutaneous porphyrias - new insights) OP9-OP14 (6x15 min) |
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| 12:30 | 14:30 | Lunch break + Poster viewing | |
| SESSION 8: DIAGNOSTIC APPROACHES – DEVELOPING ACCEPTABLE GUIDELINES | |||
| 14:30 | 15:00 | Recommendations for laboratory evaluation of diagnosis and monitoring of the porphyrias Aasne Arsang (Norway) on behalf of the EPNET Lab Working Group | |
| 15:00 | 15:30 | The utility of gene sequencing in the diagnosis of the porphyrias | |
| 15:30 | 15:45 | Open discussion | |
| 15:45 | 16:30 | Selected oral presentations (Diagnostics) OP15 OP16 (2x15 min) | |
| 16:30 | 18:00 | Break + Poster viewing | |
| 20:00 | 22:30 | FAREWELL EVENING | |
| September 7th, 2022, Wednesday | |||
| SESSION 9: RATIONAL APPROACH(ES) TO DIAGNOSIS AND CARE IN CUTANEOUS AND ACUTE PORPHYRIAS | |||
| 8:45 | 9:30 | CHAIRS: Eliane Sardh Panel input and discussions on Rational approaches to diagnosis and care of the porphyrias - Real word questions for porphyrinologists -1 (15 min) - Mike Badminton (UK) "Is geno/phenotype and variable penetrance still a problem?" "What of benign and pathogenic mutations?" "What do we advise patients?" - Real word questions for porphyrinologists -2 (15 min) - Staffan Wahlin (Sweden) "The role of prophylactic advice" "What about screening for hepatocellular carcinoma?" "Is there a role for liver transplantation?" "The role of Bone marrow transplantation as a therapy?" Open and further discussion/experience from the floor (15 min) |
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| 9:30 | 10:15 | Selected oral presentations (Diagnostics and therapeutic approaches) OP17 OP18 OP19 (3x15 min) | |
| 10:15 | 10:45 | Break + Poster viewing | |
| SESSION 10: DIAGNOSTIC and CLINICAL CONUNDRUMS | |||
| CHAIR: Herb Bonkovsky CONUNDRUMs The connundrums initiated by three case reports selected from abstracts. Questions posed will reflect the abstract/case report |
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| 10:45 | 11:05 | Case presentation 1 (10+10 min) | |
| 11:05 | 11:25 | Case presentation 2 (10+10 min) | |
| 11:25 | 11:45 | Case presentation 3 (10+10 min) | |
| 11:45 | 12:00 | POSTER PRIZES AND CONGRESS CLOSURE | |