Scientific Program Table

Note: The programme below is accurate as of October 2019 and is subject to change.

Time Monday | 28 October 2019 | UNESCO, Paris
0900 - 1200 Leiden Open Variation Database (LOVD) Workshop
Venue: Salle XII
Admission is free to all conference delegates
0930 - 1230 Closed Door Meeting - GG2020
Venue: Salle VII
by invitation only
1200 - 1400 ClinGen Expert Panel Meeting
Venue: Salle XII
by invitation only
1300 - 1400 HVP Board of Directors meeting
Venue: Salle VII
by invitation only
Time Monday | 28 October 2019 | UNESCO, Paris | Venue: Salle XII
1415 - 1420 Opening Remarks
1420 - 1445 Chairperson: Domenico Coviello
Plenary 1

GG2020: The Past, present and future (Zilfalil Alwi)(Malaysia)
Chairperson: Suthat Fucharoen & Nik Norliza Nik Hassan
Symposium 1: Country Update
1445 - 1455 Thalassemia in Indonesia: Screening Program, Diagnosis and Research (Ramdan Panigoro)
1455 - 1505 Challenges in the Management of Thalassemia in the Philippines (Catherine Lynn T Silao)
1505 - 1515 Haemoglobinopathy update in Portugal (Celeste Bento)
1515 - 1525 Haemoglobinopathies Prevalence in Iran (Nasrin Moazami)
1525 - 1535 Genomics in Pakistan: Current Status and Challenges (Humayun Iqbal Khan)
1535 - 1545 Pattern of Thalassemia and Hemoglobinopathies in Bangladesh: A Single Centered Study At ICDDR,B (Hafizur Rahman)
1545 - 1555 Q&A Session
1555 - 1610 COFFEE BREAK
Chairperson: Carsten Lederer and Ramdan Panigoro
Symposium 2: Diagnostic and Clinical Aspects of Red Cell Disorders
1610 - 1620 Talk 2 – Clinical Diversity of Compound Heterozygotes HbE/β thalassaemia IVS1-1 (Rosline Hassan)
1620 - 1630 Update on HSCT - Haplotransplant (Suradej Hongeng)
1630 -1640 Latest Update on Laboratory Test in Diagnosis of G6PD Deficiency in Malaysia (Raja Zahratul Azma Raja Sabudin)
1640 - 1650 Application of the NGS method for detection of multiple mutations in the G6PD gene (Narazah Mohd Yusoff)
1650 - 1700 Q&A Session
Time Tuesday | 29 October 2019 | UNESCO, Paris | Salle XII
0900 – 0930 Chairperson: Zilfalil Alwi
Plenary 2:

Overview of thalassaemia: Milestones and beyond – John Porter (UK)
Chairperson: Ghada El-Kamah and Johan T. den Dunnen
Symposium 3: Haemoglobin: Fundamentals and Diagnosis
0930 – 0950 Interaction between unstable haemoglobins and thalassaemias (Henri Wacjman)
0950 – 1005 Genetic Modifiers of Sickle Cell Anaemia in Patients from Nigeria: A Pilot Study (Rosemary Ekong)
1005 - 1020 Diagnostic Strategies of Thalassemia in a Developing Country (Yetty Hernaningsih)
1020 - 1040 Scientific Advances in Diagnosis (Jacques Elion)
1040 - 1100 NGS-Based Diagnosis in Thalassemia (Domenico Coviello)
1110 - 1110 Q&A Session
1110 - 1125 COFFEE BREAK
1125 - 1145 Opening Ceremony
By Dr. Hamidah Mat, GG2020 Advisor
1145 - 1225 Chairperson: John Burn
Key Note:
Gene Therapy of the Beta-haemoglobinopathies: Success and Challenges (Philippe LeBoulch)
Chairperson: Jacques Elion and Yetty Hernaningsih
Symposium 4: Enhancing Partnership in Patient Care
1225 - 1240 The Role of Support Group in Empowering Patients (Angelo Lores Brunetta)
1240 - 1255 Role of Policy Makers in Ensuring Access to Adequate Treatment to Achieve Patient and Family Quality of Life: Experiences of Malaysia (Dato’ Dr Narimah Awin)
1255 - 1310 Role of Clinicians in Ensuring Quality Health Care (Antonio Piga)
1310 - 1320 Q&A Session
1320 – 1400LUNCH
1415 – 1445 Chairperson: Narazah Mohd Yusoff
Plenary 3:

EurobloodNet: A European ReferEurobloodNet: A European Reference Network for Rare Blood Diseases and a Model for Emulation (Mariangela Pellegrini)
Chairperson: Marina Kleanthous and Nasrin Moazami
Symposium 5: Challenges and Burden to the Healthcare System
1445 – 1505 The Global Variome/Human Variome Project Partnership with UNESCO: Opportunities and Challenges (Julia Hasler)
1505 – 1525 Challenges and Burden to the Healthcare System: Perspective from Thailand (Suthat Fucharoen)
1525 - 1545 Challenges and Burden to the Healthcare System: Perspective from Europe (Patricia Aguilar Martinez)
1545 – 1605 Haemoglobinopathies: Challenges and Burden to the Healthcare System: Perspective from Egypt ((Ghada El-Kamah)
1605 - 1615 Q&A Session
Free Oral Paper 1
Chairperson: Marina Kleanthous and Norafiza Mohd Yasin
Judge: Suthat Fucharoen, Domenico Coviello
1615 – 1625 Beta-thalassemia Intermedia due to Co‐inheritance of Three Unique Alpha Globin Cluster Duplications (Ezalia Esa)
1625 – 1635 A Twenty-five Year Prospective Clinical Review and Family Studies Revealed New Globin Gene Regulators for HbF induction (Alexander Felice)
1635 - 1645 Role of Cognitive Behavioural Therapy among Adolescents with Thalassemia: A Pilot Study (Dayangku Hayaty Awg Dzulkarnain)
1645 – 1700 COFFEE BREAK
Time Wednesday | 30 October 2019 | UNESCO, Paris | Salle XII
Free Oral Paper 2
Chairperson: Serge Pissard and Zulaiha Muda

Judge: John Burn, Antonio Piga
0900 - 0910 Minimisation of False Positive Results for Alpha Thalassaemia Encountered with the iLab AlphaThal ICT Kit (Anne Gilbert)
0910 - 0920 Mapping of Thalassaemia Carrier in Sabah and Kedah: A Unique Diversity of Thalassaemia Carrier Distribution in Malaysia (Don Ismail Mohamed)
0920 - 0930 Discovery of Three New Deletional α-thalassemia Characterized by Multiplex Ligation-Dependent Probe Amplification (MLPA): 7 Years Malaysian Experience (Norafiza Mohd Yasin)
0930 - 0940 Haemoglobinopathies: Oxidative Stress as Potential Therapeutic Targets (Rabiatul Basria S.M.N. Mydin)
0940 - 0950 Red Blood Cells Free α-hemoglobin Pool: A Biomarker to Monitor Imbalanced α/non α-globin Chain Synthesis in the β-Thalassemia Intermedia. The ALPHAPOOL Study (Veronique Baudin-Creuza)
1000 - 1030 Chairperson: Zarina Abdul Latiff
Plenary 4:

Genetic modifiers in thalassaemia: Vip Viprakasit
1030 - 1045 COFFEE BREAK
Chairperson: Herve Chneiweiss and Catherine Lynn Silao
Symposium 6: Haemoglobin Variant Curation and Interpretation
1045 - 1105 Variant Curation: Overview and Challenges (Coralea Stephanou)
1105 - 1125 Variant Scoring Based on ClinGen Tools and Haemoglobinopathy-Specific Criteria (Celeste Bento)
1125 - 1145 The ITHANET-HVP Project: Moving Functional Annotation Forward (Petros Kountouris)
1145 - 1155 Q&A Session
Chairperson: Humayun Iqbal and Rosline Hassan
Symposium 7: Emerging Therapy and Novel Strategies
1155 - 1215 Luspatercept – New kid on the block (Antonio Piga)
1215 - 1235 Point of Care Testing for Thalassemia: Problems and Solutions (John Burn)
1235 - 1255 Gene Therapy Getting Personal: Mutation-Specific Editing and Gene Addition Strategies for β-Thalassemia (Carsten Lederer)
1255 – 1305 Q&A Session
1305 – 1400 Lunch
Chairperson: Julia Hasler and Helen M Robinson
Symposium 8: Screening and Prevention
1415 – 1435 Screening and Prevention of Thalassemia in Cyprus (Marina Kleanthous)
1435 – 1455 Prevention and Control Programme – The Malaysian Experience (Saidatul Buang)
1455 - 1515 Ethical Issues in Genetic Counselling for Thalassemia (Zarina A Latiff)
1515 - 1535 Fostering Responsible Research with Genome Editing Technologies (Hervé Chneiweiss)
1535 - 1555 Molecular Approach for Prenatal Diagnosis in Thalassemia (Serge Pissard)
1555 - 1605 Q&A Session
1605- 1630 Best Oral Paper/Poster Awards & Closing Remarks
1630 - 1645 COFFEE BREAK