World PI Week Talks

Preventing infections is crucial to protect people with primary immunodeficiencies, as their immune system is absent or does not function properly.

Depending on the specific type of defect, preventative medicine is crucial in keeping the patient healthy.  In addition, health awareness measures including healthy diets, regular physical activity, and mental health are important to improve quality of life.

This podcast explores how health awareness measures and preventative medicine help people living with primary immunodeficiencies, including tools such as focus groups that are used to talk to patients about those aspects and the challenges in patients’ access to preventative medicine.

Join us for a talk with:

• Prof. Bodo Grimbacher, PID specialist / immunologist, Secretary of the European Society for Immunodeficiencies - Germany
• Ruchi Saka - Senior Clinical Nurse, Postgraduate Institute of medical education and research (PGIMER), INGID member – India

Research and data collection hold the key to improving the understanding of primary immunodeficiencies and the immune system, care pathways and ultimately outcomes and quality of life of PID patients.

This podcast sheds light on the benefits of research and its role and impact on patients, families, medical practices as well as society as a whole.   It explores existing challenges surrounding research in PIDs, what the future of research may look like in the field, as well as the value of international collaboration.

Further, experts reflect on the findings resulting from COVID-19 research and how to make use of the lessons learned when it comes to PIDs. Join us for a talk with:

• Prof. Isabelle Meyts, President, European Society for Immunodeficiencies (ESID); pediatric immunologist, University Hospital Gasthuisberg, Department of Pediatrics, UZ Leuven; Specialty Chief Editor for PIDs, Frontiers in Immunology journal – Belgium
• Dr. Emily Edwards, Clinical researcher fellow, Allergy and Clinical Immunology Laboratory, Department of Immunology and Pathology, Central Clinical School, Monash University; Vice-President, AusPIPS (patient organization for PIDs) – Australia

World PI Week Talks: Episode 5 – Treatment & Care

Access to treatment and quality care is a basic human right. Everyone living with primary immunodeficiency, or PID, is entitled to receive quality treatment and care no matter where they live.

New therapies such as gene therapies are offering the possibility of a cure, however, they are not widely accessible to all patients yet.

This podcast explores different issues surrounding achieving universal access to quality healthcare for PID and gives a brief overview of the main treatment options. It also provides a glimpse into the promise of gene therapies and explores the role of transplantation in PID care.

Join us for a talk with:

• Prof. Frank Staal, Group leader, Department of Immunology, Leiden University Medical School, Netherlands
• Dr. Adli Ali, Senior Clinical Lecturer and Consultant Paediatric Immunologist, UKM Medical Center, Malaysia
• Stela Andreea Pirvu, Association for Patients with Primary Immunodeficiencies (ARPID), Romania; mother of a child who received a transplant

Glossary:

• SCID: Severe Combined Immunodeficiency

Early diagnosis is the first step in improving quality of life for patients and is critical to ensure people living with primary immunodeficiency (PID) have the best outcomes for treatment and care.

Newborn screening for severe forms of PID saves lives, but implementation is not yet widespread.

This podcast explores different issues surrounding diagnosis and screening of PIDs, including the difference it makes in the lives of patients, how neonatal screening is currently implemented worldwide, obstacles and efforts led by stakeholders across the globe to improve the situation. It also provides unique insights into the experience of several countries with making newborn screening for severe PIDs a reality and the impact it has on individuals, families and health systems.

Join us for a talk with:

· Prof. Jim Bonham, President, International Society for Neonatal Screening (ISNS)

· Prof. Antonio Condino, Director, Department of Immunology, University of Sao Paolo, Brazil

Glossary:

· PID: primary immunodeficiency (disease)

· SCID: severe combined immunodeficiency

· XLA: X-linked agammaglobulinemia