SESSIONS

  • Sunday, June 25th,  2017 – Patient Day/Congress Day 1
  • Monday, June 26th 2017 – Congress Day 2
  • Tuesday,  June 27th 2017 – Congress Day 3
  • Wednesday, June 28th 2017Congress Day 4

 

SESSION 1 : Fundamentals on Heme Biosynthesis in relation to Porphyrias

SESSION 2 : Acute Intermittent Porphyrias

SESSION 3 : Bullous Acute and chronic Porphyrias

SESSION 4 : Erythropoietic Porphyrias

SESSION 5 : Clinical Complications of the Porphyrias

SESSION 6 : Clinical evaluation and laboratory investigations in the Porphyrias

SESSION 7 : Miscellaneous and Emerging Therapies in the Porphyrias

PROVISIONAL AGENDA

Congress day 1 - agenda

sunday, june 25, 2017

9:00

Patient Day

9:00 - 16:00

Chairperson: Sylvie Le Moal

17:00

ICPP 2017 : Welcome and opening ceremony

17:00 - 22:00

Chairpersons : Hubert de VERNEUIL and Jean-Charles DEYBACH

17h00 – 19h00  ICPP 2017 Scientific Congress Registration
19h00 – 21h00  Welcome reception
21h00 – 21h15  Welcome address & the ICPP 2017 programme by chairpersons

21h15 – 22h00  Opening Ceremony Lecture:
George ELDER (UK) : A century anniversary – milestones in Porphyrias 

congress day 2 - agenda

monday, june 26, 2017

8:30

SESSION 1 : Fundamentals of Heme Biosynthesis in relation to Porphyrias

8:30 - 10:30

Chairpersons :  John PHILIPS (USA) and Hervé PUY (France)

8h30 – 10h00  Plenary Lectures :

8h30 – 9h15  PL1 : Barry PAW (USA) : Mitochondrial Iron and Heme Metabolism in Red Cells

9h15 – 10h00  PL2 : Iqbal HAMZA (USA) : Cellular transport, trafficking, and recycling of heme

10h00 – 10h30  Oral Communications selected from the abstracts (15mn each)

OC1 : Karen TOSKA (Norway) : A study of the Subcellular localization and possible role of Hydroxymethylbilane synthase in the nucleus, using cultured HepG2 cells and liver tissue

OC2 : Victoria E PARERA (Argentina) : The Effect of Insulin Growth Factor on Delta-Aminolevulinic Synthase Expression

10:30

Coffee Break

10:30 - 11:00

11:00

SESSION 2 : Acute Intermittent Porphyrias

11:00 - 13:00

Chairpersons :  Mike BADMINTON (UK) and Jordi To FIGUEIRAS (Spain)

11h00 – 12h30  Plenary Lectures :

11h00 – 11h45  PL3 : Robert J. DESNICK (USA) : Acute Intermittent Porphyria,  update 2017

11h45 – 12h30  PL4 : Eliane SARDH (Sweden) (for EU/US Porphyria Reference Centers) : Phase 1, Randomized, Placebo Controlled Study of Givosiran, an Investigational RNA Interference (RNAi) Therapeutic, in Patients with Acute Intermittent Porphyria: Interim Study Results

12h30 – 13h00  Oral Communications selected from the abstracts (15mn each) :

OC3 : Antonio FONTANELLAS (Spain) : Efficacy of systemic messenger RNA therapy to treat and prevent porphyria attacks in a mouse model of acute intermittent porphyria

OC4 : Laurent GOUYA (France) : Acute intermittent porphyria: Molecular and in silico findings towards an oligogenic model with a main impact of environment

OC5 : Sharon WHATLEY (United Kingdom) : A pilot study to identify possible genetic factors associated with acute neurovisceral attacks in patients with Acute Intermittent Porphyria

13:00

Lunch

13:00 - 14:30

14:30

EPNET General Assembly

14:30 - 16:00

16:00

International Collaboration on Porphyrias through Reference Networks

16:00 - 17:00

(EPNET, American Porphyria Consortium, MetabERN, International Porphyria Patient Organization…)

17:30

Saint Emilion Tour + Dinner

17:30 - 22:30

congress day 3 - agenda

tuesday, june 27, 2017

8:30

SESSION 3 : Bullous Acute and Chronic Porphyrias

8:30 - 10:30

Chairpersons : Herbert BONKOVSKY (USA) and Pavel MARTASEK (Czech Rep)

8h30 – 9h30  Plenary Lectures :

8h30 – 9h00  PL5 : Peter MEISSNER (SA) : Variegate porphyria – a consideration of the pathology, diagnosis and treatment – based on the South African experience

9h00 – 9h30  PL6 : Jorge FRANK (Germany) : Clinical aspects, pathophysiology and management of PCT

9h30 – 10h30  Oral Communications selected from the abstracts (15mn each) :  

OC6 : Paula AGUILERA (Spain) : Direct-acting antivirals for Hepatitis C virus induce a rapid clinical and biochemical remission of Porphyria Cutanea Tarda

OC7 : Ashwani K SINGAL (USA): Porphyria Cutanea Tarda: Profile of 192 patients from the Porphyrias Consortium in the US

OC8 : Karl E ANDERSON (USA): 5-Aminolevulinate Dehydratase Porphyria (ADP): Evidence for Hepatic ALAS1 Induction

10:30

Coffee Break

10:30 - 11:00

11:00

SESSION 4 : Erythropoietic Porphyrias

11:00 - 13:00

Chairpersons :  Sylvia BOTTOMLEY (USA) and Harry DAILEY (USA)

11h00 – 12h30  Plenary Lectures

11h00 – 11h30  PL7 : Oscar MILLET (Spain) : Pharmacological chaperones as a potential therapy for congenital erythropoietic porphyria

11h30 – 12h00  PL8 : François HALLOY (Switzerland) : Tailored oligonucleotide therapy for treatment of erythropoietic protoporphyria

12h00 – 12h30  PL9 : Janneke LANGENDONK (Netherlands) : Afamelanotide (Scenesse, CLINUVEL) for the treatment of protoporphyria-induced phototoxicity, where are we ?

12h30 – 13h00 : Oral Communications selected from the abstracts (15 mn each) :

OC9 : Jean-Marc BLOUIN (France) : Iron chelation improves haemolytic anemia and skin photosensitivity in a mouse model of congenital erythropoietic porphyria

OC10 : Hetanshi NAIK (USA) : Erythropoietic Protoporphyria: Disease Severity and Quality of Life

13:00

Lunch

13:00 - 14:30

14:30

SESSION 5 : Clinical Complications of the Porphyrias

14:30 - 16:30

Chairpersons : Pauline HARPER (Sweden) and Felicity STEWART (UK)

14h30 – 16h00  Plenary Lectures :

14h30 – 15h00  PL11 : Nicolas PALLET (France) : Porphyrias and kidney disease

15h00 – 15h30  PL12 : Staffan WAHLIN (Sweden) : Porphyria associated liver disease

15h30 – 16h00  PL13 : Karl ANDERSON (USA) : The value of long term longitudinal clinical and laboratory observations in porphyria follow up

16h00 – 16h30  Oral Communications selected from the abstracts (15mn each) :

OC11 : Elin STORJORD (Norway): Inflammation in acute intermittent porphyria is associated with high visfatin and Interleukin‑17 levels revealed by hierarchical clustering analysis

OC12 : Karen NOONAN (Australia): The Prevalence of mental health in the porphyria population. An 87 year systematic literature review meta synthesis

17:30

Gala Dinner at Château Giscours

17:30 - 23:00

congress day 4 - agenda

wednesday, june 28, 2017

8:30

SESSION 6 : Clinical Evaluation and Laboratory Investigations in the Porphyrias

8:30 - 9:45

Chairpersons : Raili KAUPPINEN (Finland) and Maria Victoria ROSSETTI (Argentina)

8h30 – 9h45 Plenary Lectures :

8h30 – 8h55  PL14 : Elisabeth MINDER (Switzerland) : Measurement of therapeutic effect in the porphyrias : Balancing the needs of professionals, patients and the pharmaceutical industry

8h55 – 9h20  PL15 : Sverre SANDBERG (Norway) : Diagnosing and monitoring porphyrias : benefits and disadvantages of centralizing porphyria dedicated laboratory tests

9h20 – 9h45 PL16 : Sharon WAHTLEY (UK) and Aasne AARSAND (Norway) : EPNET and EMQN EQAS impact on porphyria diagnosis

9h45 – 10h30  Oral Communications selected from the abstracts (15mn each) :

OC13 : Laurent GOUYA (France) : EXPLORE: A Prospective, Multinational Natural History Study of Patients with Acute Hepatic Porphyria (AHP) with Recurrent Attacks

OC14 : Aasne K AARSAND (Norway): The European Porphyria Registry: Treatment practices for acute attacks in acute intermittent porphyria patients in Europe

OC15 : Silvia TORTORELLI (USA): Increasing Clinical Specificity and Reducing Analytical Complexity in Urine Porphyrin Analysis by LC-MS/MS

10:30

Coffree Break

10:30 - 11:00

11:00

SESSION 7 : Miscellaneous and Emerging Therapies in the Porphyrias

11:00 - 13:00

Chairpersons : David REES (UK) and Gloria FEREIRA (USA)

11h00 – 12h00  Plenary Lectures

11h00 – 11h30 PL17 : François MOREAU-GAUDRY (France) : Gene correction in erythropoietic porphyrias by the CRISPR/Cas9 technology

11h30 – 12h00 PL18 : John PHILIPS (USA) : Inducing iron deficiency improves erythropoiesis and photosensitivity in CEP

12h00 – 13h00  Oral Communications selected from the abstracts (15mn each) :

OC16 : Paulina CWIEK (Switzerland) : Mouse models and U7-based splicing modulation for Erythropoietic Protoporphyria (EPP)

OC17 : Helene J BUSTAD (Norway) : Pharmacological Chaperones for the Treatment of Acute Intermittent Porphyria

13h00 – 13h15  Closing remarks, future meetings and farewell

13:15

Lunch

13:15 - 14:30

14:30

End of the Congress

14:30 -

14:30

Social Event / Arcachon Bay (optional)

14:30 - 19:00

Boat tour around the « îles aux oiseaux »