Presentations

The presentations below have been collected over the years from different conferences, meetings and events attended by INGID members. Simply select a topic to see all the related presentations, and click on the ‘download’ button to view a presentation.

Please feel free to download, save and share the presentations with your colleagues or your team. If you would like to submit a presentation or have any feedback, please contact us at secretary@ingid.org.

Genetics in PID: Edinburgh 2017
Family Clinic; Edinburgh INGID 2017
UK National Screening

UK National Screeening Committee 2015

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The Immune System
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Mannan-Binding Lectin: What do we know? Implications for Nurses and Patients with PID

Gretchen Vaughn (Budapest, Hungary 2006)

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The Normal Immune System

Dr. Peter Vickers (Istanbul, Turkey 2010)

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The Effects of the Immune System on Pregnancy

Dr. Peter Vickers (Istanbul 2010)

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“We shall fight!” What you need to know about the immune system for beginners and more advanced

Dr. Ann Gardulf (Florence, Italy 2012)

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Does Age Matter: aging and the immune system

Dr. Peter Vickers (Florence, Italy 2012)

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Severe Combined Immunodeficiency
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Global Care of a child with SCID in the pediatric Immuno-Hematology-Rhumatologie unit (Prise en charge globale d’un enfant porteur d’un SCID dans l’unitè d’immuno-hèmatologie pèdiatrique)

Pr. Alain Fischer (Istanbul, Turkey 2010)

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Alienation and PTSD in children and families with SCI

Dr. Peter Vickers (Budapest, Hungary 2006)

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Quality of Life
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Alienation and PTSD in children and families with SCI 
Dr. Peter Vickers (Budapest, Hungary 2006)

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Prognostic Factors for Improved Health-Related Quality of Life in Children and Adults With Primary Antibody Deficiencies 

Uwe Nicolay & Ann Gardulf (Budapest, Hungary 2006)

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What is patient satisfaction and what can we do about it?

Dr. Andrew Thompson (Budapest, Hungary 2006)

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Improved Quality of Life with Home Therapy with subcutaneous immunoglobulins for patients with secondary hypogammaglobulinaemia

Marie-Claude Levasseur & Elie Haddad (Florence, Italy 2012)

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JS – A patient perspective two years on! 

Fran Ashworth (Florence, Italy 2012)

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Adults with selective IgA deficiency – Health-related quality of life (HRQL) & Risk factors for poor HRQL

Guðmundur Jorgensen & Ann Gardulf (Florence, Italy 2012)

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Presentations from Prague 2014
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Genetics

Dr. Peter Vickers

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Immunology Advanced: The Genetic Pathophysiology Of Primary Immunodeficiency Disorders (PIDs)

Dr. Peter Vickers

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Immunity & Children — The Developmental Changes in the Immune System from Birth to Adulthood

Dr. Peter Vickers

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Universal Newborn Screening For SCID

Dr. Peter Vickers

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Long term safety of Infliximab in CVID related inflammatory bowel disease

Dr Nisha Verma, Department of Immunology, Royal Free Hospital, London

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World PI Week (WPIW)

Carla Duff, CPNP MSN CCRP IgCN, INGID Assistant Secretary, Member of the PI Week Steering Committee

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A single centre audit of home visit outcomes in PID patients self-infusing immunoglobulin

Emily Carne, Advanced Nurse Practitioner, Immunology & Allergy, University Hospital of Wales

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The Netherlands

Marianne van der Ent, Jolanda van Esch, Riet Strik Albers, Dutch Nursing group for Immunodeficiency (LW-VID)

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Nurse´s Role In Caring For PID Patients In Slovenia

Maja Čamernik, RN, University Children´s Hospital Ljubljana, Dpt. of Allergology, rheumatology and Clinical Immunology

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The role of the nurse in immunologie in Canada

What a nice job! Marie-Claude Levasseur inf. B.Sc, D.E.S.S Bioethic

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Sweden

The Swedish PID Nursing Organization, 1994-2014, 20 years!

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Pediatric nursing to children with primary immundeficiency

The role of the immunology nurse regarding education, guidance and the follow up of patiens with primary immundeficiancy

Kathleen Halvorsen. RN., The division of Paediatrics, Rikshospitalet, University Hospital, Oslo, Norway

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Subcutaneous Administration of Gammanorm® in Immune-Deficient Patients by Rapid Push: Report of the Belgian Experience

A. Reniers, C. Heijmans, N. Nols, R. Rombaut, R. Peche (Belgium), Ingid Programme

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Immunology Nursing in Australia

Geraldine Dunne BSc (Hons) RN, Clinical Nurse Consultant, Department of Immunology & Infectious Disease, Sydney Children’s Hospital, Randwick, Sydney, Australia

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The History of INGID

1994 – 2014, 20 years of PID nursing development, collaboration and friendship

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Universal Newborn Screening For SCID

Dr. Peter Vickers

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The Future of Immunology New Therapy Options

William Blouin, MSN, ARNP, CPNP, Miami Children’s Hospital

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IVIg for non PID uses

Christine Symons, MSc, BA (Hons), PGCE, RGN, V300, Nurse Consultant, Derriford Hospital, Plymouth

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Management of CVID patients

Current challenges, Klaus Warnatz

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Fran Ashworth

Senior Immunology & Allergy Nurse Specialist, RGN, Dip. Counselling HCP., BA (Hons) Health care Practice, MSC Health care & Social Practice

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A South African Perspective

A Caregiver and Patient’s Perspective

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SCIg vs IVIg: Let’s Give Patients the Choice!

Marie-Claude Levasseur inf. B.Sc, D.E.S.S Bioethic, Immunology-Rhumatology

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Adherence & chronic illness (Medication nonadherence in the hemato-oncology)

Barbara Gresch, MScN, RN

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Immunity & Children, The Developmental Changes in the Immune System from Birth to Adulthood

Dr. Peter Vickers

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PID patients’ perspectives of the transition process

Cathryn Benson & Barbara Boardman

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Development of National Guidelines for Immunoglobulin Therapy

M. Elizabeth M. Younger CRNP, ph.D, The Johns Hopkins University, Baltimore, Maryland

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Immunology nursing in the Czech republic today

Teplá Ilona, Králíčková Pavlína, Institute of Allergy and Clinical Immunology University Hospital Hradec Kralove, Czech Republic

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The work of nurses at the Immunology Institute ward

Bc.Dita Růčková, Charles University Immunology Institute 2nd Medical Faculty and University Hospital Motol

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University PID/SID Education for Nurses

Ann Gardulf, RN, PhD, INGID member, Bengt Steger, RN, Chairman of The Swedish PID Nursing Organisation

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PI CONNECT: Melding Two Databases To Guide Research And Outcomes Measurements In Patients With Primary Immunodeficiency

Marcia Boyle, President & Founder, Immune Deficiency Foundation, Elyse Murphy, Medical Science Liaison Leader, Immunology, CSL Behring

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Pediatric nursing to children with primary immundeficiency

The role of the immunology nurse regarding education, guidance and the follow up of patiens with primary immundeficiancy

Kathleen Halvorsen. RN. The division of Paediatrics, Rikshospitalet University Hospital, Oslo, Norway

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Patient Support
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Implementing a Patient-Led Support group for patients with immunodeficiency at Papworth Hospital, Cambridge

Karen Henderson (Istanbul, Turkey 2010)

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Other
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The ESID online database

Dr. Bodo Grimbacher (Budapest, Hungary 2006)

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Bug & Superbug (with apologies to George Bernard Shaw)

Dr. Peter Vickers (‘s-Hertogenbosch, The Netherlands 2008)

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Newborn Screening for SCID and other PIDs

L. Filipovich (Florence, Italy 2012)

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Transition Clinics: an update

Andrew Symes (Florence, Italy 2012)

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Increasing awareness of PID worldwide: Workshop by ESID-INGID-IPOPI

Esther de Vries & Anna Sediva (Florence, Italy 2012)

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Curing PI worldwide: Jeffrey Modell Foundation

Vicki & Fred Modell (Florence, Italy 2012)

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Comparison of respiratory health status in adults with CVID and Idiopathic bronchiectasis

Lorraine Ozerovitch (Florence, Italy 2012)

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Nursing in Different Countries
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Immunology Nursing at Auckland City Hospital, Auckland, New Zealand – Aotearoa

Sanchia Vos (‘s-Hertogenbosch, The Netherlands 2008)

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The role of nurses in healthcare in Turkey

Mukaddes Can Turk (Istanbul, Turkey 2010)

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Immunoglobulin Therapy
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Education of patients with primary hypogammaglobulinemia for S/C Ig self-administration

R. Laumond, J. Baron Lysio, M-L Doizé (Budapest, Hungary 2006)

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How much gammaglobulin?

Dr. Rolf Gustafson et al. (Budapest, Hungary 2006)

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Subcutaneous Immunoglobulin Therapy: A new way of permanent treatment in primary immunodeficiencies

Gaby Strotman (Budapest, Hungary 2006)

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Extended follow-up of home therapy with Hyaluronidase-facilitated subcutaneous immunoglobulin (fSCIg)

Caroline O’Grady (Istanbul, Turkey 2010)

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Importance of Ancillary Supplies for Subcutaneous Immunoglobulin Infusion: Management of the Local Infusion Site

Diane Ochoa et al. (Florence, Italy 2012)

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Use of Subcutaneous IgG in Patients on Concomitant Anticoagulant and Antiplatelet Therapy

Mark R. Stein et al. (Florence, Italy 2012)

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IVIg vs SCIg: How to Choose?

Carla Duff (Florence, Italy 2012)

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Improved Quality of Life with Home Therapy with subcutaneous immunoglobulins for patients with secondary hypogammaglobulinaemia

Marie-Claude Levasseur & Elie Haddad (Florence, Italy 2012)

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ASID et le traitement par immunoglobulins sous-cutanèes; l’expèreince Canadienne (French & English)

Marie-Claude Levasseur (Florence, Italy 2012)

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Home Therapy
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Education of patients with primary hypogammaglobulinemia for S/C Ig self-administration

R. Laumond, J. Baron Lysio, M-L Doizé (Budapest, Hungary 2006)

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Subcutaneous Immunoglobulin Therapy: A new way of permanent treatment in primary immunodeficiencies

Gaby Strotman (Budapest, Hungary 2006)

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Extended follow-up of home therapy with Hyaluronidase-facilitated subcutaneous immunoglobulin (fSCIg)

Caroline O’Grady (Istanbul, Turkey 2010)

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The value of a nursing review of the PID patient on home therapy with immunoglobulin

Caroline O’Grady (Istanbul, Turkey 2010)

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A Cultural Revolution of immunoglobulin treatment in Children with Immunodeficiency?

Malene Kapper & Anne-Grethe Boje (Florence, Italy 2012)

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Genetics and Gene Therapy
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How Did It Happen? An exploration of Genetics and Immunodeficiencies

Dr. Peter Vickers (Versailles, France 2004)

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Gene Therapy or Bone Marrow Transplant?

Emily Mullan & Andrea Stephenson (Budapest, Hungary 2006)

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Gene Therapy Trials for PID: A Nursing Perspective

Jin Hua Xu-Bayford (Budapest, Hungary 2006)

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Development in Genetics and PID

Pr. Alain Fischer (Florence, Italy 2012)

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Disorders of the Immune System
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X-Linked Agammaglobulinemia

Vanessa Howard (Versailles, France 2004)

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Disorders of the Immune System

Gretchen Vaughn (Istanbul, Turkey 2010)

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Bone Marrow Transplantation
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Reduced conditioning for BMT in children with PID

Gretchen Vaughn (‘s-Hertogenbosch, The Netherlands 2008)

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Gene Therapy or Bone Marrow Transplant?

Emily Mullan & Andrea Stephenson (Budapest, Hungary 2006)

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Photopheresis in a Pediatric Population

Mary Ann Michael (Florence, Italy 2012)

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