IPOPI – Improving awareness, diagnosis and treatment of primary immunodeficiencies worldwide

3rd IPOPI Clinical Care Webinar

39:49

IG Therapies: From good to best practice by Professor Troy Torgerson September 26, 2019
PIDs in Africa – French version

2:25

Africa is still facing many issues with even basic health care but has huge potential for diagnosing and treating primary immunodeficiency (PID) patients. Many efforts towards diagnosis and care of PIDs are being done by national PID patient groups, by physicians, by IPOPI and by the pharmaceutical industry.
Essentials of PID diagnostics

31:44

Second IPOPI Clinical Care Webinar

Speaker: Dr Kathleen Sullivan (Children’s Hospital of Philadelphia)
Moderator: Martine Pergent (IPOPI President)

Made possible with a donation from CSL Behring
Advances in management and treatment of CVID

28:22

First IPOPI Clinical Care Webinar

Speaker: Prof Klaus Warnatz (Freiburg University)
Moderator: Martine Pergent (IPOPI President)

Kindly supported by Shire
PID Genius – relaunch

2:32

Updated and improved version, now available in 5 additional languages
PIDs in Africa

02:25

Africa is still facing many issues with even basic health care but has huge potential for diagnosing and treating primary immunodeficiency (PID) patients. Many efforts towards diagnosis and care of PIDs are being done by national PID patient groups, by physicians, by IPOPI and by the pharmaceutical industry.
PID TESTIMONIAL – Dr Virgil Dalm, Netherlands

1:55

Dr Dalm works in a primary immunodeficiencies reference centre in Rotterdam, in the Netherlands, and explains why reference centres are unique treatment facilities for PID patients
PID TESTIMONIAL – Yvonne, mother of a PID patient

2:08

Yvonne is the president of the Dutch primary immunodeficiencies patient group (Stichting voor Afweerstoornissen) and the mother of a teenage boy with a PID. She shares her concerns for when he enters adult life
PID TESTIMONIAL – Anke, a Hypogammaglobulinemia patient

2:23

Anke got her definitive diagnosis only at the age of 42. Her untreated immunodeficiency caused her problems throughout life, but especially during her university years.
IPIC2017 – Dr Eva Varga

12:03

Patient testimony: Living with Hyper IgE Syndrome, a fascinating journey
IPIC2017 – Andrea Gressani

7:01

Patient testimony: Living with CGD
IPIC2017 – IPIC2017 – Mirjam Van der Burg

18:12

The importance of newborn screening for PIDs: TRECs/KRECs and beyond
IPIC2017 – Eva Brox, Norway

5:23

IPOPI 25th Anniversary speech
IPIC2017 – Nurse Rosalind Fischer

15:49

The Role of Specialised Nurse in PID
IPIC2017 – Ethics sessions: What can be said, what should be said

1:08:55

Chair: Prof Bobby Gaspar
Panel: Nurse Carla Duff, Mr Bruce Lim, Prof Alain Fischer, Mrs Jose Drabwell, Ethicist James Taylor
IPIC2017 – PID Patient Rachel Hammond

8:10

A PID UK patient perspective on the importance of transition care from the paediatric to the adult clinic
IPIC2017 – Prof Helen Chapel

19:33
IPIC2017 video report

4:09

Focus on diagnosis and clinical care
November 8-10, Dubai, UAE
PID GENIUS Tutorial

03:27

IPOPI has developed PID GENIUS for you, to support you and other persons living with primary immunodeficiencies. PID GENIUS is a dynamic App that plays the role of a personal assistant that will help you keeping track of your treatments, day-to-day symptoms, most important documents in an easy way. It is meant at reducing paperwork and facilitating the discussion with your doctor.
Patient testimonial – Césal Matias, X-LA patient

1:45

César explains how the work-life can be impacted by living with a chronic condition
Patient testimonial – mother of a SCID patient

2:09

Cristina’s daughter was diagnosed with SCID and underwent a bone-marrow transplant.
IPIC2017 – International Primary Immunodeficiencies Congress

1:16

IPOPI is hosting IPIC2017 in the vibrant city of Dubai on 8-10 November 2017!
The uniqueness of IPIC comes from its clinically orientated programme prepared with the input from the key primary immunodeficiencies stakeholders: doctors, patients and nurses.
#IPIC2017
Patient testimonial – Alberto Casaca, CDG patient

1:43

Alberto Casaca was diagnosed when he was 15 years old, he feels like the diagnosis saved his life.
Patient testimonial – Rúben Cartaxo

1:55

Rúben was diagnosed as a baby with CGD and that has had a very positive impact on his health.
Patient testimonial – mother and daughter with CVID

1:57

Mother and daughter talk about the impact of PIDs in social life
Patient testimonial – twin sisters with CVID

2:29

Ana and Maria João have CVID and were diagnosed together, following several infections and hospitalisations.
PID testimonial – Portuguese Immunologist

2:00

Dr Susana Lopes da Silva explains what PIDs are and how they are diagnosed – from clinical presentations to genetic diagnosis
PID testimonial – Ricardo Pereira, XLA patient

1:33

Ricardo Pereira, president of APDIP, Portuguese PID patient group, and an XLA patient shares his experience with his diagnosis
PID testimonial – Lutz Kurnoth, CVID patient

1:38
PID testimonial – Mother of an Agammaglobulinemia patient

2:42

Kerstin got involved with the German PID patient group – dsai – right after her son’s diagnosis. Patient groups can be a valid source of information to families with a newly diagnosed patient.
PID testimonial – Mother of a PID patient

2:22

Cornelia tells us about the time prior to her son’s diagnosis and what remains to be done in Germany for better care for primary immunodeficiency patients
PID testimonial – Spanish Immunologist

1:26

Dr Carlos Rodriguez Gallego explains what are PIDs and how important is for physicians and hospitals to cooperate to provide better care
PID testimonial – an early diagnosed CVID patient and her father

2:08

Father and daughter talk about the family experience with diagnosis and treatment
PID testimonial – Dr Maria Nuñez on diagnosis of PIDs

01:10

Dr Maria Nuñez highlights that any doctor can help in the diagnosis of PID patients by paying special attention to the warning signs.
PID testimonial – a CVID patient and an immunologist

01:52

Yolanda talks about her delayed diagnosis of CVID and Dr Nuñes expresses her concerns when receiving a new patient with a delayed diagnosis.
PID testimonial – Parents and PID patient

2:14

Marco and Yoli talking about how paediatric care for PID patients could be improved
PID testimonial – Carlos Jimenez, father of a PID patient

2:15

Benefits of early diagnosis and impact in PIDs in patients’ lives
IPIC2015 Dr James Taylor

23.03
IPIC2015 Prof Mirjam van der Burg

19.02
IPIC2015 Dr Nizar Mahlaoui

9.26

Registries: From research to clinical practise: Experience from Europe
IPIC2015 Dr Olaf Neth

6.21

Newborn screening for SCIDs: impact of gestational age and birth weight on TRECS and KRECS
IPIC2015 Dr Samira Asgari

7,38

Loss-of-function mutations in IFIH1 predispose to severe viral respiratory infections in children
IPIC2015 – Dr Charlotte Cunningham-Rundles

25.29

Management of gastro-intestinal issues in CVID patients
IPIC2015 – CVID Patient Dawn Smith presentation

18.01

A patient’s story of CVID and gastro-intestinal issues
IPIC2015 Prof Alain Fischer Keynote address

37:08

New frontiers in primary immunodeficiencies (PIDs): what have we learnt and what should we expect?
IPIC2015 Welcome

5:34

Prof Bobby Gaspar – IPIC2015 Scientific Commitee President
Jose Drabwell – IPOPI President
IPIC2015 – video report

5:20

IPIC2015 was a great success with 700 participants! The second edition of the International Primary Immunodeficiencies Congress was held in the beautiful city of Budapest, Hungary, 5-6 of November 2015.
IPIC 2013 – video report

5:04

IPIC (International Primary Immunodeficiencies Congress) is organised every two year by IPOPI (International Patient Organisation for Primary Immunodeficiencies).
400 participants attended the first edition held in Estoril (Lisbon), Portugal on 7 and 8 November 2013.
IPIC is a unique international forum focusing on clinical care and diagnosis in the PID field.
Jose Drabwell, IPOPI’s President welcoming participants to IPIC2013

3:26
Prof Helen Chapel, Immunologist, answers crucial questions about Primary Immunodeficiencies

2:31

What are PIDs?
Why is early diagnosis so important to PID patients?
Is it important to have access to different types of treatment?
Availability of different treatments and PIDs. Lisa Baldea, Romania, currently on IVIG testimony

2:04

Burden of Treatment of PID conditions.
PID patients are faced with many health decisions. Anton Emelin, Russia, shares his brother’s story.

2:13

Burden of Treatment of PID conditions.
Bruce Lim, father of a PID patient. How school life can be affected by PID replacement therapy.

2:04

Burden of Treatment of PID conditions.
Stefan Nordeman, Sweden, CVID patient, juggling family life, work life and treatment.

1:38

Burden of Treatment of PIDs
Transition care in young PID patients. Nurse Sarita and mother Anneli complementary perspectives.

2:22

Burden of Treatment of PIDs
PID testimonial – Andrea Gressani, Chronic Granulomatous Disease patient

1:30

Benefits of early diagnosis and treatment in Primary Immunodeficiencies
PID Testimonial – Rubby Chawla, Mother of PID children and Dr Adli Ali, Immunologist

1:24

Benefits of early diagnosis and treatment in Primary Immunodeficiencies
PID Testimonial – Dragana Koruga, mother of PID patient

1:47

Benefits of early diagnosis and treatment in Primary Immunodeficiencies
PID Physician and Patient testimonials – Dr Nizar Mahlaoui and Karin Modl

1:02

Benefits of early diagnosis and treatment in Primary Immunodeficiencies
PID Patient testimonial – Jose Drabwell, CVID patient, IPOPI President

1:35

Benefits of early diagnosis and treatment in Primary Immunodeficiencies
Gaby Rosario, South Africa, Hypogammaglobulinemia patient on the need for individualized treatment

1:20

Importance of individualized treatment for PID patients.
Adrian Górecki, Poland, an XLA patient, sharing experience with different PID treatments.

1:41

Importance of individualized treatment for PID patients.
Kees Waas, Netherlands, father of 2 XLA patients, with his family experience on PID treatment

1:53

Importance of individualized treatment for PID patients.
PID patients health can improve with a change in treatment.

1:51

Importance of individualized treatment for PID patients.
Mother’s experience with the treatment of 3 XLA children

2:11

Importance of individualized treatment for PID patients

IPIC2019

PUBLISHED 16 December, 2019

Related VIDEO

3rd IPOPI Clinical Care Webinar

PIDs in Africa – French version

Essentials of PID diagnostics

Advances in management and treatment of CVID

PID Genius – relaunch

PIDs in Africa

PID TESTIMONIAL – Dr Virgil Dalm, Netherlands

PID TESTIMONIAL – Yvonne, mother of a PID patient

PID TESTIMONIAL – Anke, a Hypogammaglobulinemia patient

IPIC2017 – Dr Eva Varga

IPIC2017 – Andrea Gressani

IPIC2017 – IPIC2017 – Mirjam Van der Burg

IPIC2017 – Eva Brox, Norway

IPIC2017 – Nurse Rosalind Fischer

IPIC2017 – Ethics sessions: What can be said, what should be said

IPIC2017 – PID Patient Rachel Hammond

IPIC2017 – Prof Helen Chapel

IPIC2017 video report

PID GENIUS Tutorial

Patient testimonial – Césal Matias, X-LA patient

Patient testimonial – mother of a SCID patient

IPIC2017 – International Primary Immunodeficiencies Congress

Patient testimonial – Alberto Casaca, CDG patient

Patient testimonial – Rúben Cartaxo

Patient testimonial – mother and daughter with CVID

Patient testimonial – twin sisters with CVID

PID testimonial – Portuguese Immunologist

PID testimonial – Ricardo Pereira, XLA patient

PID testimonial – Lutz Kurnoth, CVID patient

PID testimonial – Mother of an Agammaglobulinemia patient

PID testimonial – Mother of a PID patient

PID testimonial – Spanish Immunologist

PID testimonial – an early diagnosed CVID patient and her father

PID testimonial – Dr Maria Nuñez on diagnosis of PIDs

PID testimonial – a CVID patient and an immunologist

PID testimonial – Parents and PID patient

PID testimonial – Carlos Jimenez, father of a PID patient

IPIC2015 Dr James Taylor

IPIC2015 Prof Mirjam van der Burg

IPIC2015 Dr Nizar Mahlaoui

IPIC2015 Dr Olaf Neth

IPIC2015 Dr Samira Asgari

IPIC2015 – Dr Charlotte Cunningham-Rundles

IPIC2015 – CVID Patient Dawn Smith presentation

IPIC2015 Prof Alain Fischer Keynote address

IPIC2015 Welcome

IPIC2015 – video report

IPIC 2013 – video report

Jose Drabwell, IPOPI’s President welcoming participants to IPIC2013

Prof Helen Chapel, Immunologist, answers crucial questions about Primary Immunodeficiencies

Availability of different treatments and PIDs. Lisa Baldea, Romania, currently on IVIG testimony

PID patients are faced with many health decisions. Anton Emelin, Russia, shares his brother’s story.

Bruce Lim, father of a PID patient. How school life can be affected by PID replacement therapy.

Stefan Nordeman, Sweden, CVID patient, juggling family life, work life and treatment.

Transition care in young PID patients. Nurse Sarita and mother Anneli complementary perspectives.

PID testimonial – Andrea Gressani, Chronic Granulomatous Disease patient

PID Testimonial – Rubby Chawla, Mother of PID children and Dr Adli Ali, Immunologist

PID Testimonial – Dragana Koruga, mother of PID patient

PID Physician and Patient testimonials – Dr Nizar Mahlaoui and Karin Modl

PID Patient testimonial – Jose Drabwell, CVID patient, IPOPI President

Gaby Rosario, South Africa, Hypogammaglobulinemia patient on the need for individualized treatment

Adrian Górecki, Poland, an XLA patient, sharing experience with different PID treatments.

Kees Waas, Netherlands, father of 2 XLA patients, with his family experience on PID treatment

PID patients health can improve with a change in treatment.

Mother’s experience with the treatment of 3 XLA children