Cédric Anchisi (52 years old) has been a pilot with Air France for 28 years, following his service in the French Navy. A father to Ambre and Éloïse, he tragically lost his younger daughter in 2012 at the age of 10 due to a lung infection. This occurred just months after she had gone into remission from a lymphoma linked to Ataxia Telangiectasia (AT).

Ms Anido de Pena has been the Founder and President of the Association for Assistance to Patients with Primary Immunodeficiency (A.A.P.I.D.P.) since 2005, and the Founder and President of the Argentine Federation of Rare Diseases (FADEPOF) since 2020. She is actively involved in international organisations, such as the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the Ibero-American Alliance for Rare Diseases (ALIBER). In 2019, she joined the Rare Disease International (RDI) Policy Committee and became the Representative of the WHO Global Collaborative Network for Rare Diseases (WHO CGN 4RD). She received an Honorary Diploma from the Honourable Senate of the Nation in 2014 for her advocacy work in the defense of human rights.

Aleksandra’s work focuses on unravelling the function of the cerebellum in health and disease. Her laboratory has been investigating the role of the cerebellum in cognition in general and in autism spectrum disorder (ASD) in particular. They showed that cerebellar deficits are common in ASD mouse models. By disrupting cerebellar activity during different stages of development, we established a critical period during which specific cerebellar regions are crucial for non-motor behaviours.

Dr Prabal Barman completed his graduation (MBBS) from Gauhati Medical College, Guwahati, Assam, India (2015) and post-graduation (MD) in Paediatrics from Advanced Paediatrics Centre, Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh, India (2020). He is currently pursuing his 3-year post-doctoral (DM) training programme in Paediatric Clinical Immunology and Rheumatology at the Advanced Paediatrics Centre, PGIMER, Chandigarh, India. This is the first, and till date the only, such post-doctoral training course in Paediatric Immunology in India.

Prof Dr Cornelis Boersma (1978) has a master’s degree in pharmacy and a PhD in pharmaco-epidemiology, health economics and health policy (University of Groningen). He has ~20 years of experience in healthcare from various roles such as scientific researcher, teacher, consultant, and the positions he held at the pharmaceutical industry. Cornelis is an independent consultant (Health-Ecore), entrepreneur (Digital Health Link, SensUR Health and PITTS).

Prof Bonham is currently the President of the International Society of Neonatal Screening. In the UK, he leads the national laboratory for newborn screening. He’s long been interested in diagnosing metabolic disorders in kids. He travels a lot to join meetings about organising and improving newborn screening. He’s also curious about using genomics in newborn screening alongside regular tests. Additionally, Prof Bonham leads a global group with the International Federation of Clinical Chemistry. They’re working together to bring newborn screening to more places, especially in countries with fewer resources.

Siobhan Burns is a Professor of Translational Immunology at University College London. She is a clinical academic with an interest in primary immunodeficiency disorders (PID). Originally trained in paediatric immunology, she worked at UCL Institute of Child Health and Great Ormond Street Hospital before moving to the Institute of Immunity and Transplantation and the Adult Clinical Immunology department at the Royal Free Hospital, London. Prof Burns has a special interest in rare monogenic causes of immunodeficiency. Her research group is focused on understanding the underlying molecular and cellular mechanisms that give rise to PID, with a particular interest in how genetic mutations associated with PID impact the function of immune cells.

Dr Mari Campbell is a consultant clinical psychologist with over twenty years of experience. Specialising in mental health and clinical health psychology, she works with individuals, couples, and families using cognitive-behavioural and systemic frameworks. At the Royal Free, Dr Campbell leads the Psychology Service in the Department of Clinical Immunology, providing one-to-one sessions for patients with immunodeficiencies. Her research focuses on long-term outcomes, improving healthcare pathways, and the effectiveness of psychological therapy for rare diseases.

Fabio Candotti is a Full Professor of Medicine at the University of Lausanne and Head Physician in the Division of Immunology and Allergy of the Lausanne University Hospital, in Lausanne, Switzerland. He received his MD from the University of Brescia (Italy) and completed his residencies in Pediatrics and Pediatric Allergy and Immunology at the Universities of Pavia (Italy), and Brescia (Italy), before joining the National Institutes of Health in the USA as a postdoc in the field of gene therapy.

Graduated in Biology from University of Malaga with an honour’s degree in her bachelor thesis. Since 2020, she is a resident of Immunology in the Department of Clinical Immunology at the Gregorio Marañón Hospital (Madrid). Currently, Dr Trinidad Alba Cano is interested in cellular immunology participating in different lines of research associated. She was awarded with the young PID investigators poster session in IPIC 5^th edition.

Emily Carne is a Consultant Nurse in Immunology & Allergy Service for Wales in Cardiff.  She has worked as the lead nurse in the service since 2001, completed her immunology MSc in 2006, advanced nurse practitioner qualification in 2007 and independent prescribing qualification in 2019. Emily has a particular interest in and has published on different aspects of primary immunodeficiency, including quality of life, home therapy and burden of treatment.

Dr Cunningham-Rundles is a David S. Gottesman Professor of Immunology at the Mount Sinai School of Medicine in New York. She is a Professor of Medicine and Pediatrics, a member of the Prism Immunology Institute, and directs the Immunodeficiency Clinic at Mount Sinai. She is also a co-Program Director of the Allergy Immunology Fellowship training program. She is a member of the Inborn Errors of Immunity Committee (IEI) of the IUIS. She received her MD from Columbia College of Physicians and Surgeons, and her PhD from New York University School of Medicine. Dr. Cunningham-Rundles is an expert in the more than 450 Primary Immune Deficiency diseases, conditions that result from genetic defects of the immune system.

Prof Dr Dalm is a renowned physician and researcher specialising in clinical immunology and primary immunodeficiency (PID) at Erasmus University Medical Center Rotterdam. With over 10 years of experience, he focuses on identifying genetic defects underlying PIDs to develop targeted treatments. He also investigates underreported complications in PID, including skin, endocrine, neurodevelopmental, fertility, and psychiatric disorders. His recent interest lies in understanding the link between PIDs and neuropsychiatric complications. Dr Dalm envisions leveraging genetic defects to create better treatments for PID patients.

Ms Mary Louise Daly is an advanced practice nurse (APN) specialising in rheumatology. She works at the University Hospital Basel and the University Children’s Hospital (UKBB) in Switzerland. With over ten years of experience, Ms Mary supports adolescent and young adult patients during their transition from pediatric to adult services. She is also involved in caring for adult rheumatology patients at the University Hospital Basel. Ms Mary is an active member of INGID and has contributed to the development of a German-speaking immunology nurse network. Her expertise, combined with her academic background in medical anthropology and analytical chemistry, makes her a valuable asset to the healthcare community.

Ms Drabwell, a board member since 2008, has played a pivotal role in IPOPI’s growth. She served as President from 2008 to 2018 and continues her contributions as a board member. Jose’s efforts have raised global awareness about primary immunodeficiencies (PIDs), advocating for optimal treatment and collaborating with stakeholders worldwide. Her initiatives led to the “Principles of Care” publication, shaping PID forums in the EU parliament. Under her guidance, the Bob le Bien Asian Development program launched multiple national member organisations in Asia.

Dr Nahla Hashim Hassan Erwa has been the Chairperson of the Clinical Immunology Specialty Council, Sudan Medical Specialization Board since 2018. Her clinical immunology experience includes managing adults and children with immunological and allergic diseases. She established the clinical immunology unit at Soba University Hospital in Khartoum (2014), which became the main referral centre for patients with primary immunodeficiency (PID) and other immunological conditions. Her role as a teacher involves training and teaching both undergraduate and postgraduate medical and paramedical personnel in basic immunology, immunopathology, and clinical immunology.

Rifaldy Fajar holds a bachelor’s degree in mathematics, specialising in Mathematical Modelling for Biology and Medicine. His undergraduate thesis focused on modeling meningitis disease. He completed a 6-month research internship at the Living Systems Laboratory, Department of Bioscience and Computer Science, King Abdullah University of Science and Technology, Saudi Arabia, refining his skills. He pursued an Erasmus master’s Double Degree in Applied and Interdisciplinary Mathematics at the University of L’Aquila, Italy, and Karlstad University, Sweden.

Alain Fischer obtained his medical degree (pediatrics) in 1979, he became professor of immunology at Paris Descartes University, then in 1991 director of an INSERM unit “Normal and pathological development of the immune system”. He was head of the “Pediatric Immunology and Hematology” unit (UIH) at the Necker Hospital (AP-HP) from 1996 to 2012. In November 2002, he was elected full member of the Academy of Sciences and in 2011 of the Academy of Medicine.

Andrew Gennery is a Professor in Paediatric Immunology and Haematopoietic Stem Cell Transplantation at the University of Newcastle upon Tyne and Honorary Consultant for the Northern Supra-Regional Bone Marrow Transplant Unit for SCID and related disorders, at the Great North Children’s Hospital, Newcastle upon Tyne, clinically qualified and active. He spent a year of post-doctoral studies working with Anne Durandy and Alain Fischer in the Necker Hospital in Paris and was involved in the discovery of Cytidine Deaminase one of the first genes to be discovered involved in class switch recombination and somatic hypermutation.

Whitney Ayoub Goulstone is currently the Executive Director for the Canadian Immunodeficiencies Patient Organisation. A rare disease patient herself, she has been working in advocacy and health for over a decade. Whitney is active on various boards and committees, with present work including: the Working Advisory Group on Immune Globulin Supply, the Network for Rare Blood Diseases Organisation, the Canadian Association for Population Therapeutics, the Centre for ADHD Awareness Canada, the Canadian Standards Agency Technical Committee for Blood and Blood Products, and the Canadian Blood Services’ National Liaison Committee.

Elie Haddad is a clinician scientist in paediatric immunology, Professor of Paediatrics at the University of Montreal. His clinical research focuses on primary immune deficiency. He is the President of the Clinical Immunology Society, and he is one of the three PI of the Primary Immune Deficiency Treatment Consortium, an NIH-funded consortium of 47 North American Centres.

Prof Martin van Hagen is an internist-immunologist at the Department of Internal Medicine. He serves as the Head of the Clinical Immunology Unit at Erasmus Medical Center in Rotterdam and is also a staff member at the Rotterdam Eye Hospital. Additionally, he holds the position of Visiting Professor at Chulalongkorn University in Bangkok, Thailand. He is the Vice-Chair of IPOPI’s Medical Advisory Panel. Prof van Hagen is an expert in diagnosing and treating patients with immune-mediated diseases. His department cares for approximately 4000 patients with well-defined rare immune diseases.

Prof Hammarström works as a professor of clinical immunology at the Karolinska Institutet in Stockholm, Sweden. His main scientific interest is primary immunodeficiency diseases, trying to diagnose patients on a genetic level in order to allow for targeted therapy. For the past few years, he has been using large scale whole genome sequencing (WGS) to diagnose genetic diseases in newborns, thus being able to initiate treatment already before symptoms appear.

Matthew Harold is Head of External Affairs and Strategic Partnerships for Novartis Global Health & Sustainability. Novartis Global Health’s mission is to broaden patient access to appropriate medicines regardless of location and socio-economic factors. Matt directs the external engagement and partnership strategies for Global Health, which aim to build inclusive communities, coalitions, and partnerships to address unmet healthcare needs for underserved patients. Matt leads and has oversight on all external engagements for Global Health, including senior-level government and stakeholder meetings, as well as Novartis’s presence at key global health summits and forums.

Prof Mustafa Salih holds degrees from the University of Khartoum and Uppsala University in Sweden. His expertise is acknowledged through fellowships, including The Royal College of Paediatrics and Child Health (UK) and the American Academy of Neurology (USA).

Prof Hidalgo-Simon is an experienced scientist and regulator, currently working at Leiden University Medical Center (LUMC) with the reNEW project. For the past 20 years she was employed by the European Medicines Agency (EMA), most recently as head of the office for Advanced Therapies. Previous positions include the head of the Specialised Scientific Disciplines Department, head of Signal Detection, and head of Risk Management, also at EMA.

Fabian Hauck, MD, PhD, is a Professor of Paediatrics at the Dr. von Hauner Children’s Hospital in Munich, Germany. He leads the Division of Pediatric Immunology and Rheumatology, focusing on inborn errors of immunity (IEI). Dr. Hauck is also a member of the European Society for Immunodeficiencies (ESID) and serves as the vice president of the German Speaking Working Party for Paediatric Immunology.

Following the completion of her PhD in immunogenetics in Morocco, Dr Jeddane has dedicated her career to the advancement of diagnosis and treatment for immune dysfunctions. Currently serving as a scientific manager at the esteemed Mohammed VI National Laboratory, she plays a pivotal role in overseeing specialised testing procedures, including diagnostic tests for immune dysfunctions. Notably, Dr Jeddane holds the esteemed position of Immediate-Past President of the African Society for Immunodeficiencies, further exemplifying her commitment to driving progress in the field.

Prof Jolles is a Consultant Clinical Immunologist and Honorary Professor at the University Hospital of Wales. He is Clinical Lead in the Immunodeficiency Centre of Wales, Co-Director of the Hub Immunology Diagnostic Laboratory of Wales, and Clinical Lead for the Adult SWAN (Syndrome Without a Name) clinic.

Sibel Kaplan Sarıkavak was born on July 29, 1990, in Diyarbakır, Turkey, and graduated from Hacettepe University Faculty of Medicine, Ankara, from 2008 to 2014. She worked as an assistant in the Pediatric Department at Hacettepe University from 2015 to 2019. Driven by a profound interest in allergy and immunology, she worked as a fellow in the Pediatric Immunology and Allergy Department at Trakya University from 2020 to 2021. She is presently a fellow at Başakşehir Cam and Sakura City Hospital, a renowned center for tracking and managing immunodeficiency cases.

Dr Lee is a Clinical Associate Professor at the University of Hong Kong, specialising in clinical immunology and haematopoietic stem cell transplantation (HSCT). She serves as the Chief of Service in the Department of Pediatrics at The University of Hong Kong-Shenzhen Hospital. Dr. Lee is an honorary consultant for the HSCT service at the Hong Kong Children’s Hospital and The HKU-Shenzhen Hospital. She is actively involved in organising educational programs for primary immunodeficiencies and blood and marrow transplantation. Additionally, Dr. Lee serves as a medical adviser for PID League, a primary immunodeficiency advocacy group in Hong Kong.

Mr Lim is the Chairperson and co-founder of the Malaysian Patients’ Organisation for Primary Immunodeficiencies (MyPOPI), and the Vice-President of IPOPI. He is also the owner of Modern Engineering Solutions Sdn. Bhd. in Malaysia. Bruce’s personal connection to primary immunodeficiencies (PID), through his son who is affected with X-linked Agammaglobulinaemia, led him to establish MyPOPI in 2014.

Dr Nizar Mahlaoui is a renowned paediatrician specialising in immuno-hematology at Necker-Enfants Malades University Hospital in Paris, France. He manages the French National Reference Center for Primary Immune Deficiencies and is known for his expertise in rare diseases, particularly Primary Immunodeficiencies. Dr. Mahlaoui is the founder of the Adolescent and Young Adults Transition Care Program “La Suite,” which has been recognised for its innovative approach. He has published extensively and holds a Ph.D. in Epidemiology and Public Health.

Dr Elise Mallart is a young infectious diseases specialist with a sub-specialisation in paediatrics. During her residency, she worked at the Necker Hospital in Paris, where she studied pregnancy in women with primary immunodeficiency diseases, as part of her MD thesis.

Prof Marabelle is a physician-scientist with expertise in oncology (MD) and immunology (PhD). His clinical practice is dedicated to early phase clinical trials of cancer immunotherapies within the Drug Development Department (DITEP) of Gustave Roussy Cancer Center in France. He leads a translational research laboratory (LRTI) within the INSERM U1015 with a focus on mechanisms of action of immune targeted therapies. He is also the director of the Clinical Investigation Center BIOTHERIS dedicated to intertumoral immunotherapies (INSERM CIC1428). He is a full professor of Clinical Immunology at the University of Paris Saclay.

Dr Joris van Montfrans completed his medical study at the Rijks Universiteit Leiden and his PhD at the Vrije Universiteit Amsterdam. He performed his pediatric training at the UMC Utrecht and at Tygerberg Hospital in Cape Town, South Africa. He is a consultant in pediatric immunology since 2009. Dr van Montfrans works in the UMC Utrecht as a clinical doctor and as a researcher in primary immunodeficiencies. The research areas he is involved in include clinical studies into long term complications of antibody deficiencies, and genetic causes of primary immune deficiencies.

Dr Morris is a renowned Professor of Clinical Cell and Gene Therapy at UCL’s Institute of Immunity & Transplantation. She is a leading expert in Haematopoietic Stem Cell Transplantation (HSCT) and serves as the Director of the Division of Infection and Immunity. Dr. Morris’s research focuses on T cell immunology, gene therapy, and gene editing. She has made significant contributions to translational studies, ranging from animal models to Phase I clinical trials. Additionally, she is involved in charitable work as a patron of Haematology Cancer Care (HCC) and is a scientific founder of Quell Therapeutics Ltd, a UCL Spin-out company specializing in gene-engineered regulatory T cells.

Ms Olotch is a Projects, Energy, and Infrastructure lawyer at IKM Advocates and the Chairperson and Founder of PIDs Kenya, a registered NGO that supports individuals and families affected by primary immunodeficiencies in Kenya. She is also a rising star in her field, having been ranked IFLR1000, and is a writer for the World Bank’s Public Private Partnerships blog.

Ms Pergent is currently the President of IPOPI and was elected in October 2018 after serving eight years as IPOPI Vice-President. She has wide experience in patient advocacy and is particular­ly committed to raising awareness on PIDs as rare condi­tions, improving access to early and accurate diagnosis and personalised treatment, encouraging, and supporting the creation of new patient organisations, especially committed to low- and middle-income countries. She has special interest in the benefit rare diseases can obtain with the progress of medical and social sciences, technology, and digitalisation.

Johan Prevot has worked in the healthcare sector for 20 years in the field of patient advocacy and health policy. Mr. Prevot is the Executive Director of the International Patient Organisation for Primary Immunodeficiencies (IPOPI). As such he is responsible for the management and growth of IPOPI’s global activities, awareness, and advocacy campaigns as well as the strengthening of IPOPI’s national member organisations network.

Dr Rivers is a paediatric immunologist working at Great Ormond Street Hospital in London. After completing her medical degree in Cardiff (Wales, UK) in 2009, she commenced specialist clinical paediatric training in London (UK) in 2011. She developed a keen interest in primary immunodeficiencies (PIDs) early in her paediatric career and undertook a PhD in Professor Adrian Thrasher’s laboratory at the Molecular and Cellular Immunology Unit of University College London’s Great Ormond Street Institute for Child Health 2016-2019.

Prof Sanchez-Ramon is an Associate Professor of Immunology at the Complutense University of Madrid School of Medicine, also serving as the Head of the Immunology Department at the Hospital Universitario Clínico San Carlos. Her research is centred on Neuroimmunology and Immunoregulation. Additionally, she has been elected as the President-Elect of the Spanish Society of Immunology, demonstrating their commitment to advancing immunological research and healthcare practices in Spain.

Ruchi Saka completed her graduation (B.Sc. Nursing) and Post graduation (M.Sc. Paediatrics Nursing) from Post graduate Institute of Medical Education and Research (PGIMER). She then pursues serving PID at Paediatrics Allergy Immunology Day Care, Advanced Paediatrics Centre (WHO collaborating centre for Education, Research and Training in Paediatric Immunology) PGIMER, Chandigarh, INDIA.

Prof Sediva has a long time experience as a pediatrician working at all levels of pediatric care, from a local hospital to University affiliated specialized centers. Her further practice in immunology includes internships abroad from 1992 to 1995 at New York Medical College in NY, USA and further as the Fulbright scholar in University of Chapel Hill, North Carolina, USA, in 2001. From 2010 to 2015 she held a position on the ESID board and since 2011 she is chairing JMF and since 2022 also ERN centers in Prague.

Dr Segundo is an Associate Professor at the Department of Pediatrics, Hospital de Clinicas, Federal University of Uberlandia. With a specialisation in allergy and immunology, he has been responsible for the outpatient clinic of patients with inborn errors of immunity since 2004. Currently serving as the President of LASID (Latin American Society for Immunodeficiencies), he actively contributes to research, medical education, and health policies to improve the diagnosis and care of patients with inborn errors of immunity.

Prof Seidel is a Professor of Translational Pediatric Hematology and Immunology at the Medical University of Graz, Austria. In October 2022 he was elected as chairperson of the ESID registry with 25.000 patients with inborn errors of immunity for his aims to facilitate clinical research in this important field of rare diseases. Furthermore, for the next five years, he heads the Styrian Children’s Cancer Research Unit, an infrastructural project at the Medical University of Graz.

Dr Seymour has served since 2016 on the Board of Trustees for the International Patient Organisation for Primary Immunodeficiencies (IPOPI). He served on the Board of Trustees for the Immune Deficiency Foundation (IDF) in the United States from 2006-2022, serving as Chair from 2012-2021. Dr. Seymour has been a family therapist for over 45 years, with a focus on children, adolescents, and their families. Much of his clinical practice, university teaching, clinical supervision, and research has focused on resilience and coping with chronic illnesses.

Prof Singh is a distinguished paediatric leader, heading the Paediatrics Department and Paediatric Allergy/Immunology Unit at PGIMER, Chandigarh. He expanded academic programs, introducing DM Programs and Fellowships, and boasts 480 research publications. He founded India’s first Paediatric Immunology Unit and initiated the sole DM Program in Paediatric Clinical Immunology/Rheumatology. His influence also extends nationally, as he actively participates in key medical boards.

Frank Staal is full professor of Molecular Stem Cell biology at Leiden University School of Medicine (LUMC). He is co-director of the LUMC Flow Cytometry Core Facility (FCF) and holds teaching positions at Delft University of Technology and Erasmus MC, Rotterdam, The Netherlands. He was a postdoctoral Fellow of the Royal Academy of Arts and Sciences, member of the Health Council that advises the Dutch Government (on neonatal screening) and coordinates two large EU H2020 consortia on gene therapy for immune disorders.

Dr Narissara Suratannon is an assistant Professor of the Division of Allergy and Immunology in the Department of Paediatrics, Faculty of Medicine, Chulalongkorn University. She is the Head of Paediatric Allergy & Clinical Immunology Research Unit, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand. She is also the Group Leader of the Clinical Immunology Interest Group of Allergy, Asthma, and Immunology Society of Thailand.

Before her present involvement with patient rights and advocacy, she was a graduate of Political Science and Communication from the West University of Timisoara and she had a marketing manager position in a local company. In 2012, her daughter Maia (now 14 years old) was diagnosed with a primary immune deficiency. Since then, she started reading a lot about PIDs, found out about the existence of IPOPI and ARPID and got more and more involved with the Romanian patient organisation.

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Dr Speckmann is a senior lecturer at the Faculty of Medicine of the Albert Ludwig University Freiburg, Germany. He works as consultant for Paediatric Immunology and Hematopoietic Stem Cell Transplantation (HSCT) at the Freiburg University Medical Center’s Department for Pediatric Hematology/Oncology and the Center for Chronic Immunodeficiency (CCI). His research group has a focus on natural history studies for inborn errors of immunity (IEI) treatable by HSCT and/or targeted therapies.

James Stacey Taylor is a Professor of Philosophy at The College of New Jersey. He has single-authored over 100 academic articles and book chapters. He is the author of five books, the most recent of which is Bloody Bioethics: Why prohibiting donor compensation harms patients and wrongs donors (Routledge, 2022). He has authored numerous Op-Eds for publications such as the Los Angeles Times, the New York Daily News, and USA Today. His award-winning Op-Ed for the Los Angeles Times was credited with influencing the ruling of the United States 6th District Court circuit that led to the legalization of payment for bone marrow.

Prof Warnatz is a Senior Physician, Head of Division of Immunodeficiency, Department of Rheumatology and Clinical Immunology and Center for Chronic Immunodeficiency (CCI), University Medical Centre Freiburg, Germany.

Ms Willems is 38 years old and resides in Zwolle, The Netherlands. She works as a violin teacher and was diagnosed with CTLA-4 haplo-insufficiency in 2018. In 2019, she underwent a stem cell transplant as a result of her diagnosis.