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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 Andrea Gressani Keynote lecture: The journey of CGD - 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 Andrea Gressani Keynote lecture: The journey of CGD - 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
9:05 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 Setting the scene: 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-Ch...
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 Setting the scene: 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-Chair
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 and 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 Setting the scene: 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-Chair
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 and 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) - David Josey, Canada (ImmUnity Canada), Somayeh Khojaste, Iran (IPIA), Silvia Casati and Sergio Vicentini, Italy (AIP), Emi Homareda, Japan (PID Tsubasa-no-Kai), Bruce Lim, Malaysia (MyPOPI), Maria Anebane, Morocco (HAJAR), Tracy Shaw, United States of America (IDF)
At the IPOPI Room - Les Goudes 1
- Discover NMO initiatives in fundraising (speed dating format) - David Josey, Canada (ImmUnity Canada), Somayeh Khojaste, Iran (IPIA), Silvia Casati and Sergio Vicentini, Italy (AIP), Emi Homareda, Japan (PID Tsubasa-no-Kai), Bruce Lim, Malaysia (MyPOPI), Maria Anebane, Morocco (HAJAR), Tracy Shaw, United States of America (IDF)
At the IPOPI Room - Les Goudes 1
12:00 PM
Session 5: Unmet needs in rare diseases, differing perspectives (ESID-INGID-IPOPI 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, Switzerland
12:20-12:30 - Ms Geraldine Dunne, 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, Switzerland
12:20-12:30 - Ms Geraldine Dunne, 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 GoulstoneImmunodeficiencies, a growing and complex family14:00-14:15 Let’s consider the wording - Prof Markus Seidel, Austria14:15-14:30 Defining PIDs - Dr Pere Soler Palacín, 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: What could we consider to embrace moving forward? Identify key priorities - Prof Markus Seidel, Austria; Dr Pere Soler Palacín,...
MODERATORS: Ms Whitney Ayoub Goulstone
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 Pere Soler Palacín, 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: What could we consider to embrace 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 Pere Soler Palacín, 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: What could we consider to embrace 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
MODERATORS: Mr Bruce Lim and Ms Leire Solis
What strategies are used to access universal coverage?
15:30-15:40 How does UHC work from availability to coverage? - Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager
15:40-15:50 How to address UHC, the case of patients with haemophilia - TBC
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 UHC work from availability to coverage? - Ms Leire Solis, IPOPI Health Policy and Advocacy Senior Manager
15:40-15:50 How to address UHC, the case of patients with haemophilia - TBC
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) - Carolyn Dews, Australia (IDFA), Bruce Lim, Malaysia (MyPOPI), Jorey Berry, United States of America (IDF), Johan Prevot, IPOPI Executive Director, Leire Solis, IPOPI Health Policy and Advocacy Senior ManagerTopics include: Advocacy, Awareness, Fundraising, Communication and Media...
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) - Carolyn Dews, Australia (IDFA), Bruce Lim, Malaysia (MyPOPI), Jorey Berry, United States of America (IDF), Johan Prevot, IPOPI Executive Director, Leire Solis, IPOPI Health Policy and Advocacy Senior Manager
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) - Carolyn Dews, Australia (IDFA), Bruce Lim, Malaysia (MyPOPI), Jorey Berry, United States of America (IDF), Johan Prevot, IPOPI Executive Director, Leire Solis, IPOPI Health Policy and Advocacy Senior Manager
Topics include: Advocacy, Awareness, Fundraising, Communication and Media, and others.
At the IPOPI Room - Les Goudes 1
5:30 PM
Break
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
Mental Health and PIDs: sharing our perspectives
At the IPOPI Room - Les Goudes 1
Mental Health and PIDs: sharing our perspectives
At the IPOPI Room - Les Goudes 1
11:30 AM
Session 11: Outlook on new and innovative therapies
MODERATOR: Ms Jose Drabwell and Ms Leire Solis
New and innovative therapies
11:30-11:50 Paediatric perspective - Dr Olaf Neth, Germany.
11:50-12:10 Adult perspective - Prof Silvia Sanchez-Ramon, Spain.
12:10-12:30 Discussion
At the IPOPI Room - Les Goudes 1
New and innovative therapies
11:30-11:50 Paediatric perspective - Dr Olaf Neth, Germany.
11:50-12:10 Adult perspective - Prof Silvia Sanchez-Ramon, Spain.
12:10-12:30 Discussion
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.14:10-14:25 State of the art: AI impact on treatment, diagnosis, registries, medicines, research, and documentation - Dr Jacques Rivière, Spain.14:25-14:35 Diagnosis: the example of Dr Wharehouse - Dr Nicolas Garcelon, France.14:35-15:10 Questions & Answers15:10-15:25 Team productivity thanks to AI - Ms Martine Pergent and Mr Rafael Graça, IPOPI Communication...
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.
14:10-14:25 State of the art: AI impact on treatment, diagnosis, registries, medicines, research, and documentation - Dr Jacques Rivière, Spain.
14:25-14:35 Diagnosis: the example of Dr Wharehouse - Dr Nicolas Garcelon, France.
14:35-15:10 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.
14:10-14:25 State of the art: AI impact on treatment, diagnosis, registries, medicines, research, and documentation - Dr Jacques Rivière, Spain.
14:25-14:35 Diagnosis: the example of Dr Wharehouse - Dr Nicolas Garcelon, France.
14:35-15:10 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) - 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 Al - Prof Albert Farrugia , Italy.
16:20-17:30 Discussion on the ESID meeting highlights, IPOPI MAP Members
At the IPOPI Room - Les Goudes 1
16:00-16:20 State of the art with Immunoglobulins Al - Prof Albert Farrugia , Italy.
16:20-17:30 Discussion on the ESID meeting highlights, IPOPI MAP Members
At the IPOPI Room - Les Goudes 1
5:30 PM