World PI Week Talks
By World PI Week
Facilitated by Health Journalist Sue Saville, it explores a variety of topics surrounding primary immunodeficiencies (PIDs), rare and genetic diseases that occur when one's immune system is absent or deficient, with potential life-threatening health consequences without early diagnosis and proper care.
Listen to these episodes, in which Sue talks PIDs with multiple experts and patients. Season 1 was launched during World PI Week 2021, season 2 in 2022.
Join the conversation on social media with #WPIWTalks.
World PI Week Talks Apr 22, 2022
World PI Week Talks: Episode 7 - Preventive Medicine
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
World PI Week Talks: Episode 6 - Research
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 and Care
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
World PI Week Talks: Episode 4 - Early diagnosis and newborn screening
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
· PID: primary immunodeficiency (disease)
· SCID: severe combined immunodeficiency
· XLA: X-linked agammaglobulinemia
World PI Week Talks: Episode 3 - Mental health
Good mental health is as important as good physical health. However, it is sometimes difficult to talk about one’s mental health issues or emotional challenges. Being diagnosed with a chronic disease like PIDs and coping with it in daily life can be challenging and bring a lot of different emotions. Everyone’s situation is unique and there is no single way of dealing with these. Seeking help or an attentive hear is very important.
This podcast episode explores different topics surrounding mental health, from the value of mental health promotion, well-being measures, to the latest insights from research in mental health & PIDs, and potential avenues to improve awareness of mental health at all levels, notably in society.
A clinical psychologist and two patients share their experiences, learnings and tips that may be of support to other people experiencing difficult times or who may feel overwhelmed in the COVID-19 context and beyond.
Join us for a talk with:
• Dr Mari Campbell, Royal Free London NHS Foundation Trust; University College London (UCL)
• Magdalena Döragrip, Swedish Patient Organisation for PIDs (PIO)
Joined by Vivian Kohlberg, from the Bolivian PID Patients Group (FIDEP)
*This podcast covers topics that may be sensitive and/or emotional*
For more information:
Mind for better mental health (UK)
Mental wellbeing resources by the World Health Organisation (WHO)
Guidance on mental health & COVID-19 by the World Health Organisation (WHO)
Booklet on PIDs and Psychological Management by the International Patient Organisation for Primary Immunodeficiencies (IPOPI)
Handbooks for patients and families (including emotional life aspects) – chapters 42 to 46 for all age groups by the Immune Deficiency Foundation (IDF)
World PI Week Talks: Episode 2 - Vaccination & PIDs
The COVID-19 pandemic has put vaccination at the front of the stage in the context of COVID-19 vaccines. But there are many other aspects to vaccination. This second episode of the ‘World PI Week Talks’ looks at routine immunization, the role of vaccination in the case of PID patients, vaccines awareness and innovation in the field of vaccines. What are the links between vaccination and PIDs? What is herd immunity and what significance does it have for immuno-compromised patients? What about innovation in the field of vaccines? What do we know about the safety and the effectiveness of COVID-19 vaccines for PIDs? What can be done to improve immunization awareness and vaccines education?
Hear from the following experts on these key topics:
• Ruchi Saka, Post Graduate Institute of Medical Education and Research (PGIMER); International Nursing Group for Immunodeficiencies (INGID)
• Prof. Kathleen Sullivan, Children’s Hospital Philadelphia
For more information:
Resources on vaccines and immunization by the World Health Organisation (WHO)
Information on COVID-19 and vaccination by the World Health Organisation (WHO)
Guidance on vaccines & PIDs by the the International Patient Organisation for Primary Immunodeficiencies (IPOPI)
Find us on Twitter, Instagram and Facebook to learn more about the World PI Week, keep up with the latest developments and join the discussion about the #WPIWTalks.
World PI Week Talks: Episode 1 - Plasma availability
This first episode of the World PI Week podcast series explores issues surrounding plasma and plasma-derived medicines as well as plasma availability: What is plasma? Why is it so important for many people with rare diseases like PIDs? What are the challenges surrounding plasma availability and how to address these? What is the impact of COVID-19 on plasma supplies? Why donating plasma and how?
In this insightful Talk, Sue Saville is joined by:
· Amy Efantis, Plasma Proteins Therapeutics Association (PPTA)
· Dr Leni Von Bonsdorff, International Plasma and Fractionation Association (IPFA)
· Terry Young, Plasma donor
Find us on Twitter, Instagram and Facebook to learn more about the World PI Week, keep up with the latest developments and join the discussion around the #WPIWTalks.