55:00
IPOPI is a non-profit international organisation and the leading advocate for primary immunodeficiency (PID) patients worldwide working in collaboration with patients, doctors, politicians, regulators, pharmaceutical industry and other relevant stakeholders.
IPOPI is the Association of national PID patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide through global collaboration.
Visit our website at www.ipopi.org
55:00
Calculated Globulins: Clinical and Lab perspective
46:05
48:56
43:29
Speaker: Prof John Hurst
Moderator: Martine Pergent
Sponsored by CSL Behring
12:17
Second part of IPOPI’s mini documentary: management in adults Dr Virgil Dalm, patients Samantha and Bart
14:18
First part of IPOPI’s mini documentary: management in children Prof Alain Fischer, family Melmoux, Dr Nizar Mahlaoui
Recorded in France in February 2020
50:00
Speaker: Dr Pamela Lee
Moderator: Martine Pergent
Sponsored by Grifols
38:21
Speaker: Dr Virgil Dalm
Moderator: Martine Pergent
Sponsored by Takeda
42:22
Speaker: Prof Raffaele Badolato
Moderator: Martine Pergent
Sponsorerd by X4Pharmaceuticals
49:55
Speaker: Professor Charlotte Cunningham-Rundles
Moderator: Martine Pergent
Sponsored by CSL Behring
48:13
Speaker: Professor Stephen Jolles
Moderator: Martine Pergent
Sponsored by CSL Behring
43:50
5th IPOPI Clinical Care Webinar
Speaker: Prof Frédéric Rieux-Laucat
Moderator: Martine Pergent
Sponsored by Sobi
45:27
4th IPOPI Clinical Care Webinar
Speaker: Prof Isabelle Meyts
Moderator: Martine Pergent
Sponsored by Octapharma
20:11
12:29
10:36
20:20
26:37
28:30
25:25
11:51
19:37
24:07
10:13
00:56
39:49
3rd IPOPI Clinical Care Webinar
Speaker: Professor Troy Torgerson
Moderator: Martine Pergent
IG Therapies: From good to best practice
Made possible by a donation from Takeda
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.
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
28:22
First IPOPI Clinical Care Webinar
Speaker: Prof Klaus Warnatz (Freiburg University)
Moderator: Martine Pergent (IPOPI President)
Kindly supported by Shire
2:32
Updated and improved version, now available in 5 additional languages
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.
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
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
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.
12:03
7:01
Patient testimony: Living with CGD
18:12
The importance of newborn screening for PIDs: TRECs/KRECs and beyond
5:23
IPOPI 25th Anniversary speech
15:49
The Role of Specialised Nurse in PID
1:08:55
Chair: Prof Bobby Gaspar
Panel: Nurse Carla Duff, Mr Bruce Lim, Prof Alain Fischer, Mrs Jose Drabwell, Ethicist James Taylor
8:10
A PID UK patient perspective on the importance of transition care from the paediatric to the adult clinic
19:33
4:09
Focus on diagnosis and clinical care
November 8-10, Dubai, UAE
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.
1:45
César explains how the work-life can be impacted by living with a chronic condition
2:09
Cristina’s daughter was diagnosed with SCID and underwent a bone-marrow transplant.
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
1:43
Alberto Casaca was diagnosed when he was 15 years old, he feels like the diagnosis saved his life.
1:55
Rúben was diagnosed as a baby with CGD and that has had a very positive impact on his health.
1:57
Mother and daughter talk about the impact of PIDs in social life
2:29
Ana and Maria João have CVID and were diagnosed together, following several infections and hospitalisations.
2:00
Dr Susana Lopes da Silva explains what PIDs are and how they are diagnosed – from clinical presentations to genetic diagnosis
1:33
Ricardo Pereira, president of APDIP, Portuguese PID patient group, and an XLA patient shares his experience with his diagnosis
1:38
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.
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
1:26
Dr Carlos Rodriguez Gallego explains what are PIDs and how important is for physicians and hospitals to cooperate to provide better care
2:08
Father and daughter talk about the family experience with diagnosis and treatment
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.
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.
2:14
Marco and Yoli talking about how paediatric care for PID patients could be improved
2:15
Benefits of early diagnosis and impact in PIDs in patients’ lives
23.03
19.02
9.26
Registries: From research to clinical practise: Experience from Europe
6.21
Newborn screening for SCIDs: impact of gestational age and birth weight on TRECS and KRECS
7,38
Loss-of-function mutations in IFIH1 predispose to severe viral respiratory infections in children
25.29
Management of gastro-intestinal issues in CVID patients
18.01
A patient’s story of CVID and gastro-intestinal issues
37:08
New frontiers in primary immunodeficiencies (PIDs): what have we learnt and what should we expect?
5:34
Prof Bobby Gaspar – IPIC2015 Scientific Commitee President
Jose Drabwell – IPOPI President
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.
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.
3:26
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?
2:04
Burden of Treatment of PID conditions.
2:13
Burden of Treatment of PID conditions.
2:04
Burden of Treatment of PID conditions.
1:38
Burden of Treatment of PIDs
2:22
Burden of Treatment of PIDs
1:30
Benefits of early diagnosis and treatment in Primary Immunodeficiencies
1:24
Benefits of early diagnosis and treatment in Primary Immunodeficiencies
1:47
Benefits of early diagnosis and treatment in Primary Immunodeficiencies
1:02
Benefits of early diagnosis and treatment in Primary Immunodeficiencies
1:35
Benefits of early diagnosis and treatment in Primary Immunodeficiencies
1:20
Importance of individualized treatment for PID patients.
1:41
Importance of individualized treatment for PID patients.
1:53
Importance of individualized treatment for PID patients.
1:51
Importance of individualized treatment for PID patients.
2:11
Importance of individualized treatment for PID patients