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SESSION 1 – PID’s and Gastro-intestinal Issues

We listened to a patient story but it was so dragged out that most of the people all around us start leaving the room. We must be short on patient stories – I think that delegates want to hear the problem and the resolution, not too much about the road to the solution.

SESSION 2 – Autoimmunity in PID’s

Scientific and molecular basis of autoimmunity in PID’s

The Clinical management of autoimmune cytopenia’s

Managing lung complications in CVID – an autoimmune issue

SESSION 3 – Focus on SCID

This was one of the most interesting sessions I attended.

The spectrum of Severe Combined Immunodeficiency defects – Prof. Bobby Gaspar

SCID Treatment advances – Bone marrow transplant and Gene Therapy

  • Newborn screening and the implementation thereof
  • Gene therapy
  • PID’s treated by allogeneic hematopoietic stem cell transplantation

SCID Newborn screening – an update by Prof Jennifer Puck

SCID Newborn screening in Brazil – Prof Antonio Condino-Neto


The important role of the nurse in Immunology

Nurse Sarita Workman is a specialist Sister in Immunology Research at the Royal Free London Nasional Health Services Foundation Trust.  She talked about her role of nursing in Immunology, her research while working and training others.  Sarita has been working in the field of Immunology for over 11 years. Her position is the set up and co-ordination of clinical trials and research studies occurring within the department, as well as including the administration of Immunoglobulins to patients, home therapy training and assessments.  She also co-ordinates specialist clinics such as the adult post bone marrow transplant (BMT) clinic and the transition clinic between child and adult services from Great Ormond street Hospital to the Royal Free Hospital ensuring that the patients transfer from service to service goes as smoothly as possible.

A remarkable women, she is a natural speaker and I could hear that she did her training with ease.

 Training patients for home therapy

Nurse Carla Duff gave a talk on administer home therapy and I could hear that South Africa are way behind most of these countries if it comes to home therapy.

Setting up new services for PID patients, sharing knowledge and skills

Nurse Karin Ludwig started off talking about medical care as a whole in South Africa.  The problems that keep us from proper diagnoses and research.  The state of the state hospitals and clinics and the negative attitude of some of the nurses working in the unhealthy environment.  She mentioned that nurses training for subcutaneous infusion has started and that she is going to train more nurses all around South Africa to train their nurses in the specific province.

Nurse Karin Ludwig, together with her 2 children are SCID patients, she is a hands-on subcutaneous infusion nurses trainer.  Nurse Karin also accomplished home therapy training in sub-cut to be paid out by a medical aid for the first to a private nurse in SA.

IPIC 2015 Cruise Dinner

IPIC 2015 Cruise Dinner












SESSION 4 – Management of infectious complications and immune dysregulation in PID’s

Biological agents in Primary Immunodeficiency

Managing infectious complications in the developing world

Immunisation and infections in PID’s

SESSION 5 – Oral presentations / Poster winners

I attended this session with Nurse Carla Duff, member of INGID and nurse in Atlanta USA.  She presented a poster on her husband who passed away 18 months ago.  Unfortunately someone else won this award.

SESSION 6 – The promises and pitfalls of new genetics

New technologies identifying new gene defects in PID’s

Ethical perspective on genetics and PID’s

SESSION 7 – Registries:  How to use them to advance clinical care

Registries: From research to clinical practice

ESID registry patient experience

Jose Drabwell, Chairperson for IPOPI in UK talked about her own experience that started in the late 90’s after a delayed diagnoses of CVID.

Registries are essential to society and are a major tool for public health policies.  Data is also essential for research, also for national and international collaborative research.

Patient representation:

Must be involved at regular meetings

Members must take part in decision making process

Financial and strategic decisions

Experience from United States – Prof Jennifer Puck talked about the newest project called “Following infants with low lymphocytes” FILL

Experience from Africa – Dr Monica Esser discussed the issues in AFRICA – the vast environment and still a lot to do and establish.  This is our challenge to train and equip doctors to early diagnoses of PID.  Once we can establish a better registry in SA, we can help the other countries on the continent of AFRICA to progress in the field with establishing registries.


This was a scientific congress and whoever attended these sessions went home with a library full of knowledge to implement in their specific Countries to make a difference in PID.

I am working and dealing with a Primary Immunodeficiency child (Anle has Ataxia Telangiectasia) on a daily basis and this was a very noteworthy congress.  I also made some new friends and was privileged to meet other attendees and also some of the presenters whose sessions I attended.

My sincere thanks to PINSA and IPOPI who sponsored this wonderful experience. Also special thanks to INGID for allowing me to share accommodation with one of their members.


IPIC International Patients Immunodeficiency Congress
PID Primary Immunodeficiency
IPOPI International Patient Organization for Primary Immunodeficiency
SCID Severe Combined Immunodeficiency
CVID Common Variable Immunodeficiency
INGID International Nurses Group for Immunodeficiency
BMT Bone Murrow Transplant
PPTA Plasma Protein Therapeutics Association
PLUS Platform for Plasma Product Users
ASID Africa Society for Immunodeficiency
LASID Latin American Society for Immunodeficiency
NHS National Health Services
SLT Speech and Language Therapy
ESID European Society for Immunodeficiency
ICH Institute of Child Health
PICU Paediatric Intensive care Unit
XLA X-Linked agammaglobulinemia
TRECs T-cell Receptor Excision Circles
KRECs Kappa-deleting Recombination Excision Circles
GA Gestational Age
BW Birth Weight
DBS Dried Blood Spots
WASP Wiskott-Aldrich Syndrome
WIP WASP Interacting Protein
LAD Leukocyte Adhesion Deficiency
PIDD Primary Immunodeficiency Diseases
CGD Chronic Granulomatous Disease
SCIG Subcutaneous Immunoglobulins
IVIG Intravenous Immunoglobulin
HIV Human Immunodeficiency Virus
BTK Bruton Tyrosine Kinase
COPD Chronic Obstructive Pulmonary Disease
CCI Centre for Chronic Immunodeficiencies
UKM University Kebangsaan Malaysia
SEAPID South East Asia Primary Immunodeficiency
NIH National Institute of Health
CRRDC Centre for Research in Rare Diseases in Children