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Where
Marseille Chanot - Palais des Congrès
Rond-Point du Prado 114
Room: Les Goudes 1
Marseille, Provence-Alpes-Côte d'Azur, France
Agenda
Day 1
( 10/16/2024 )
Day 2
( 10/17/2024 )
Day 3
( 10/18/2024 )
12:00 PM
Lunch
At the Exhibition Area
1:30 PM
Session 1: Welcome Session
MODERATOR: Ms Martine Pergent
13:30-13:40 Chair´s Welcome - Ms Martine Pergent, IPOPI President
13:40-14:40 IPOPI team welcome - Icebreaker - Ms Whitney Ayoub Goulstone, Ms Otilia Stanga, and Ms Miriam Ferreira, IPOPI
14:40- 14:45 IRIS Welcome to Marseille - Mr Pierre Aubisse, IRIS representative, France
14:45-15:30 CGD at 70: Where Have We Been and Where are We Going? - Prof Steve Holland, United States of America
At the IPOPI Room - Les Goudes 1
13:30-13:40 Chair´s Welcome - Ms Martine Pergent, IPOPI President
13:40-14:40 IPOPI team welcome - Icebreaker - Ms Whitney Ayoub Goulstone, Ms Otilia Stanga, and Ms Miriam Ferreira, IPOPI
14:40- 14:45 IRIS Welcome to Marseille - Mr Pierre Aubisse, IRIS representative, France
14:45-15:30 CGD at 70: Where Have We Been and Where are We Going? - Prof Steve Holland, United States of America
At the IPOPI Room - Les Goudes 1
3:30 PM
Session 2: How to bring my patient organisation to the next level? (X4 Pharma sponsored session)
MODERATORS: Ms Martine Pergent and Dr John Seymour
15:30– 17:00 How to bring your patient organisation to the next level? (Skill building workshop)
At the IPOPI Room - Les Goudes 1
15:30– 17:00 How to bring your patient organisation to the next level? (Skill building workshop)
At the IPOPI Room - Les Goudes 1
5:00 PM
Break
5:15 PM
ESID-IPOPI-INGID JOINT OPENING CEREMONY
At the Plenary Hall
5:35 PM
ESID Honorary Lifetime Achievement Award
At the Plenary Hall
6:05 PM
ESID Opening Keynote Lecture
At the Plenary Hall
7:05 PM
8:05 PM
Welcome Reception
At the Exhibition Area
8:30 AM
Session 3: Newborn screening and diagnosis in the context of the genomic revolution (Chiesi sponsored session)
MODERATORS: Ms Roberta Anido de Pena and Dr Nizar MahlaouiNewborn screening – where are we and where do we go from here?08:30-08-40 The newborn screening international landscape & how to get screening off the ground - Mr Johan Prévot, IPOPI Executive Director08:40-08:55 SCID newborn screening: learning from countries who have implemented it – Prof Dr Fabian Hauck, Germany08:55-09:05 New horizons for SCID newborn screening? – the case of Malaysia – Mr Bruce Lim, IPOPI Vice-President09:05-09:20 ...
MODERATORS: Ms Roberta Anido de Pena and Dr Nizar Mahlaoui
Newborn screening – where are we and where do we go from here?
08:30-08-40 The newborn screening international landscape & how to get screening off the ground - Mr Johan Prévot, IPOPI Executive Director
08:40-08:55 SCID newborn screening: learning from countries who have implemented it – Prof Dr Fabian Hauck, Germany
08:55-09:05 New horizons for SCID newborn screening? – the case of Malaysia – Mr Bruce Lim, IPOPI Vice-President
09:05-09:20 Diagnosis in the context of genomics - Dr Cybel Mehawej, Lebanon
09:20-10:00 Panel discussion: The future of newborn screening and the role of genomics. Identification of key points and priorities - Mr Johan Prévot, Prof Dr Fabian Hauck, Mr Bruce Lim and Dr Cybel Mehawej.
At the IPOPI Room - Les Goudes 1
view moreNewborn screening – where are we and where do we go from here?
08:30-08-40 The newborn screening international landscape & how to get screening off the ground - Mr Johan Prévot, IPOPI Executive Director
08:40-08:55 SCID newborn screening: learning from countries who have implemented it – Prof Dr Fabian Hauck, Germany
08:55-09:05 New horizons for SCID newborn screening? – the case of Malaysia – Mr Bruce Lim, IPOPI Vice-President
09:05-09:20 Diagnosis in the context of genomics - Dr Cybel Mehawej, Lebanon
09:20-10:00 Panel discussion: The future of newborn screening and the role of genomics. Identification of key points and priorities - Mr Johan Prévot, Prof Dr Fabian Hauck, Mr Bruce Lim and Dr Cybel Mehawej.
At the IPOPI Room - Les Goudes 1
10:00 AM
Coffee Break
At the Exhibition Area
10:30 AM
Session 4: Fundraising: Get inspired!
MODERATORS: Ms Cynthia Olotch and Ms Alicia Bartos - Discover NMO initiatives in fundraising (speed dating format):Presenters: Mr Pierre Aubisse, France (IRIS); Ms Emi Homareda, Japan (PID-Tsubasa-no-Kai); Mr Bruce Lim , Malaysia (MyPOPI); Ms Tracy Shaw, USA (IDF); Ms Maria Anebane, Morocco (HAJAR); Ms Sian van den Bogaerdt-Rance , Netherlands (SAS); Ms Somayeh Khojaste, Iran (IPIA); Ms Silvia Casati and Mr Sergio Vicentini, Italy (AIP); Mr David Josey (Immunity Canada)At the IPOPI Room - Les G...
MODERATORS: Ms Cynthia Olotch and Ms Alicia Bartos
- Discover NMO initiatives in fundraising (speed dating format):
Presenters: Mr Pierre Aubisse, France (IRIS); Ms Emi Homareda, Japan (PID-Tsubasa-no-Kai); Mr Bruce Lim , Malaysia (MyPOPI); Ms Tracy Shaw, USA (IDF); Ms Maria Anebane, Morocco (HAJAR); Ms Sian van den Bogaerdt-Rance , Netherlands (SAS); Ms Somayeh Khojaste, Iran (IPIA); Ms Silvia Casati and Mr Sergio Vicentini, Italy (AIP); Mr David Josey (Immunity Canada)
At the IPOPI Room - Les Goudes 1
view more- Discover NMO initiatives in fundraising (speed dating format):
Presenters: Mr Pierre Aubisse, France (IRIS); Ms Emi Homareda, Japan (PID-Tsubasa-no-Kai); Mr Bruce Lim , Malaysia (MyPOPI); Ms Tracy Shaw, USA (IDF); Ms Maria Anebane, Morocco (HAJAR); Ms Sian van den Bogaerdt-Rance , Netherlands (SAS); Ms Somayeh Khojaste, Iran (IPIA); Ms Silvia Casati and Mr Sergio Vicentini, Italy (AIP); Mr David Josey (Immunity Canada)
At the IPOPI Room - Les Goudes 1
12:00 PM
Session 5: Unmet needs in rare diseases, differing perspectives (IPOPI-ESID-INGID Joint session)
MODERATORS: Ms Jose Drabwell
Unmet medical needs versus unmet patient needs
12:00-12:10 - Ms Martine Pergent, IPOPI President
12:10-12:20 - Prof Fabio Candotti, ESID President
12:20-12:30 - Ms Mary Louise Daly, INGID
12:30-12:45 - Discussion
At the IPOPI Room - Les Goudes 1
Unmet medical needs versus unmet patient needs
12:00-12:10 - Ms Martine Pergent, IPOPI President
12:10-12:20 - Prof Fabio Candotti, ESID President
12:20-12:30 - Ms Mary Louise Daly, INGID
12:30-12:45 - Discussion
At the IPOPI Room - Les Goudes 1
12:45 PM
Lunch
At the Exhibition Area
2:00 PM
Session 6: Primary and secondary immunodeficiencies: Defining and establishing communalities (Takeda sponsored workshop)
MODERATORS: Ms Whitney Ayoub Goulstone and Prof Silvia Sánchez-RamónImmunodeficiencies, a growing and complex family14:00-14:15 Let’s consider the wording - Prof Markus Seidel, Austria14:15-14:30 Defining PIDs - Dr Jacques Rivière , Spain14:30-14:45 Defining SIDs - Dr Virgil Dalm, Netherlands14:45-15:00 PIDs/SIDs what are the communalities? - Prof Felipe Suarez, France15:00-15:30 Panel Discussion: Patient journey through the views of haematologists and immunologists. How can NMOs approach patie...
MODERATORS: Ms Whitney Ayoub Goulstone and Prof Silvia Sánchez-Ramón
Immunodeficiencies, a growing and complex family
14:00-14:15 Let’s consider the wording - Prof Markus Seidel, Austria
14:15-14:30 Defining PIDs - Dr Jacques Rivière , Spain
14:30-14:45 Defining SIDs - Dr Virgil Dalm, Netherlands
14:45-15:00 PIDs/SIDs what are the communalities? - Prof Felipe Suarez, France
15:00-15:30 Panel Discussion: Patient journey through the views of haematologists and immunologists. How can NMOs approach patient orgs representing SIDs? What could we consider moving forward? Identify key priorities - Prof Markus Seidel, Austria; Dr Pere Soler Palacín, Spain; Dr Virgil Dalm, Netherlands; and Prof Felipe Suarez, France.
At the IPOPI Room - Les Goudes 1
view moreImmunodeficiencies, a growing and complex family
14:00-14:15 Let’s consider the wording - Prof Markus Seidel, Austria
14:15-14:30 Defining PIDs - Dr Jacques Rivière , Spain
14:30-14:45 Defining SIDs - Dr Virgil Dalm, Netherlands
14:45-15:00 PIDs/SIDs what are the communalities? - Prof Felipe Suarez, France
15:00-15:30 Panel Discussion: Patient journey through the views of haematologists and immunologists. How can NMOs approach patient orgs representing SIDs? What could we consider moving forward? Identify key priorities - Prof Markus Seidel, Austria; Dr Pere Soler Palacín, Spain; Dr Virgil Dalm, Netherlands; and Prof Felipe Suarez, France.
At the IPOPI Room - Les Goudes 1
3:30 PM
Session 7: Access: Availability, Affordability, Coverage (Biotest sponsored workshop)
MODERATORS: Mr Bruce Lim and Ms Leire Solis
What strategies are used to access universal coverage?
15:30-15:40 How does this work from availability to coverage? - Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager
15:40-15:50 Industry perspective - Mr Henrik Oehme, Biotest
15:50-16:00 What do NMOs need to know in medical economics? - Prof Dr Cornelis Boersma, Netherlands
16:00-16:15 Discussion
At the IPOPI Room - Les Goudes 1
What strategies are used to access universal coverage?
15:30-15:40 How does this work from availability to coverage? - Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager
15:40-15:50 Industry perspective - Mr Henrik Oehme, Biotest
15:50-16:00 What do NMOs need to know in medical economics? - Prof Dr Cornelis Boersma, Netherlands
16:00-16:15 Discussion
At the IPOPI Room - Les Goudes 1
4:15 PM
Coffee Break
At the Exhibition Area
4:45 PM
Session 8: DIY : Introduction to IPOPI Toolkit
MODERATORS: Ms Otilia Stanga, Mr Rafael Graça and Ms Miriam Ferreira16:45-16:55 Launch the IPOPI Toolkit – Miriam Ferreira, IPOPI NMO Programmes Officer16:55-17:30 Introduction to specific tools (speed dating format):Presenters: Mr Iqbal Hossain, Bangladesh (PIDPSB); Ms Carolyn Dews, Australia (IDFA); Ms Blanca Imbert, Puerto Rico (APIP); Jorey Berry, USA (IDF); Ms Jose Verstegen, Netherlands (SAS); Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager; Mr Bruce Lim, Malaysia (MyPOPI)...
MODERATORS: Ms Otilia Stanga, Mr Rafael Graça and Ms Miriam Ferreira
16:45-16:55 Launch the IPOPI Toolkit – Miriam Ferreira, IPOPI NMO Programmes Officer
16:55-17:30 Introduction to specific tools (speed dating format):
Presenters: Mr Iqbal Hossain, Bangladesh (PIDPSB); Ms Carolyn Dews, Australia (IDFA); Ms Blanca Imbert, Puerto Rico (APIP); Jorey Berry, USA (IDF); Ms Jose Verstegen, Netherlands (SAS); Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager; Mr Bruce Lim, Malaysia (MyPOPI); Mr Johan Prevot, IPOPI Executive Director.
Topics include: Advocacy, Awareness, Fundraising, Communication and Media, and others.
At the IPOPI Room - Les Goudes 1
view more16:45-16:55 Launch the IPOPI Toolkit – Miriam Ferreira, IPOPI NMO Programmes Officer
16:55-17:30 Introduction to specific tools (speed dating format):
Presenters: Mr Iqbal Hossain, Bangladesh (PIDPSB); Ms Carolyn Dews, Australia (IDFA); Ms Blanca Imbert, Puerto Rico (APIP); Jorey Berry, USA (IDF); Ms Jose Verstegen, Netherlands (SAS); Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager; Mr Bruce Lim, Malaysia (MyPOPI); Mr Johan Prevot, IPOPI Executive Director.
Topics include: Advocacy, Awareness, Fundraising, Communication and Media, and others.
At the IPOPI Room - Les Goudes 1
5:30 PM
Free time
7:30 PM
11:50 PM
PID Champions Awards Ceremony (Registration Mandatory)
Exclusive to invited delegates from IPOPI's National Member Organisations (NMO) only.
9:00 AM
Session 9: IPOPI Annual General Assembly (Closed session for IPOPI members only)
MODERATORS: Ms Martine Pergent and Mr Johan Prévot
At the IPOPI Room - Les Goudes 1
At the IPOPI Room - Les Goudes 1
10:00 AM
Coffee Break
At the Exhibition Area
10:30 AM
Session 10: Mental health and PIDs (IPOPI – INGID Joint session)
MODERATOR: Dr John Seymour and Ms Elizabeth Davis
Mental Health and PIDs: sharing our perspectives
10:30-10:40 What does mental health embrace from the patient's perspective? - Mr Cédric Anchisi, France.
10:40-10:50 What do we know about Mental Health? - Dr Julia Hews Gerarad, Canada.
10:50- 11:00 How to address Mental Health? - Ms Toya AI, Belgium.
11:00-11:30 Panel Discussion, followed by Questions & Answers.
At the IPOPI Room - Les Goudes 1
Mental Health and PIDs: sharing our perspectives
10:30-10:40 What does mental health embrace from the patient's perspective? - Mr Cédric Anchisi, France.
10:40-10:50 What do we know about Mental Health? - Dr Julia Hews Gerarad, Canada.
10:50- 11:00 How to address Mental Health? - Ms Toya AI, Belgium.
11:00-11:30 Panel Discussion, followed by Questions & Answers.
At the IPOPI Room - Les Goudes 1
11:30 AM
Session 11: Outlook on new and innovative therapies
MODERATORS: Ms Jose Drabwell and Dr Lúcia Mamede
New and innovative therapies
11:30-11:50 Paediatric perspective - Prof Bénédicte Neven, France.
11:50-12:10 Adult perspective - Prof Silvia Sánchez-Ramón, Spain.
12:10-12:30 Panel Discussion, followed by Questions & Answers
At the IPOPI Room - Les Goudes 1
New and innovative therapies
11:30-11:50 Paediatric perspective - Prof Bénédicte Neven, France.
11:50-12:10 Adult perspective - Prof Silvia Sánchez-Ramón, Spain.
12:10-12:30 Panel Discussion, followed by Questions & Answers
At the IPOPI Room - Les Goudes 1
12:30 PM
IPOPI Group Picture
1:00 PM
Lunch
At the Exhibition Area
2:00 PM
Session 12: Artificial intelligence, how can it help the PID community? (CSL - Behring sponsored workshop)
MODERATORS: Ms Martine Pergent and Mr Johan Prévot14:00-14:10 What do we speak of - Dr Nizar Mahlaoui, IPOPI Medical Advisory Panel Chair.14:10-14:20 State of the art: AI impact on treatment, diagnosis, registries, medicines, research, and documentation - Dr Jacques Rivière, Spain.14:20-14:30 Diagnosis: the example of Dr Wharehouse - Dr Nicolas Garcelon, France.14:30-15:10 Panel Discussion, followed by Questions & Answers15:10-15:25 Team productivity thanks to AI - Ms Martine Pergent and Mr Raf...
MODERATORS: Ms Martine Pergent and Mr Johan Prévot
14:00-14:10 What do we speak of - Dr Nizar Mahlaoui, IPOPI Medical Advisory Panel Chair.
14:10-14:20 State of the art: AI impact on treatment, diagnosis, registries, medicines, research, and documentation - Dr Jacques Rivière, Spain.
14:20-14:30 Diagnosis: the example of Dr Wharehouse - Dr Nicolas Garcelon, France.
14:30-15:10 Panel Discussion, followed by Questions & Answers
15:10-15:25 Team productivity thanks to AI - Ms Martine Pergent and Mr Rafael Graça, IPOPI Communications Manager.
15:25-15.30 Questions & Answers
At the IPOPI Room - Les Goudes 1
view more14:00-14:10 What do we speak of - Dr Nizar Mahlaoui, IPOPI Medical Advisory Panel Chair.
14:10-14:20 State of the art: AI impact on treatment, diagnosis, registries, medicines, research, and documentation - Dr Jacques Rivière, Spain.
14:20-14:30 Diagnosis: the example of Dr Wharehouse - Dr Nicolas Garcelon, France.
14:30-15:10 Panel Discussion, followed by Questions & Answers
15:10-15:25 Team productivity thanks to AI - Ms Martine Pergent and Mr Rafael Graça, IPOPI Communications Manager.
15:25-15.30 Questions & Answers
At the IPOPI Room - Les Goudes 1
3:30 PM
Coffee Break
At the Exhibition Area
4:00 PM
Session 13: Meet IPOPI Medical Advisory Panel (MAP) and NEX (Network of Experts)- ESID highlights
MODERATORS: Dr Nizar Mahlaoui; Prof Martin van Hagen; Ms Roberta Anido de Pena, and Ms Cynthia Olotch
16:00-16:20 State of the art with Immunoglobulins - Prof Albert Farrugia, Italy.
16:20-17:30 Discussion on the ESID meeting highlights, IPOPI MAP Members: Prof Silvia Sánchez-Ramón, Prof Tadej Avcin, Dr Cecilia Poli, Dr Virgil Dalm, Prof Antonio Condino-Neto, and Dr Anna Scherbina.
At the IPOPI Room - Les Goudes 1
16:00-16:20 State of the art with Immunoglobulins - Prof Albert Farrugia, Italy.
16:20-17:30 Discussion on the ESID meeting highlights, IPOPI MAP Members: Prof Silvia Sánchez-Ramón, Prof Tadej Avcin, Dr Cecilia Poli, Dr Virgil Dalm, Prof Antonio Condino-Neto, and Dr Anna Scherbina.
At the IPOPI Room - Les Goudes 1
5:30 PM