Thinking Porphyria, Working Together

International Congress on
Porphyrins and Porphyrias

4-7 September 2022
Sofia, Bulgaria

Аbstract submission still open!
(Extended until July 10th , 2022) Submit
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Scientific Program

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Scientific Program

  1. Workshop
  2. Patient Day
  3. Sep 4th, 2022
  4. Sep 5th, 2022
  5. Sep 6th, 2022
  6. 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)
September 4th, 2022, Sunday
Patient Day Sofia, Bulgaria
10:00 10:15 WELCOME
OPENING REMARKS and Connection bingo
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.
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)
15:00 15:30 Additional
Closing remarks
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)
17:45 18:00 EPNET Presentation
(Recognition of retirees/honorary members, Introduction to EPNET and role of this congress)
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)
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)
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)
11:25 12:05 ALAS1 knockout mouse liver haem repletion sans haem biosynthesis: (Im)possible mechanisms?
Makiko Yasuda (USA)
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)
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)
15:45 16:15 Selected oral presentations (AHP - new and emerging therapies)
Selected oral presentations (Basic heme/porphyrin science OP7 OP8 (2x15 min)
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
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)
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)
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)
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
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

ICPP 2022

ICPP 2022

Thinking Porphyria, Working Together

International Congress on
Porphyrins and Porphyrias

4-7 September 2022
Sofia, Bulgaria

ICPP 2022

ICPP 2022

Thinking Porphyria, Working Together

International Congress on
Porphyrins and Porphyrias

4-7 September 2022
Sofia, Bulgaria

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