{"id":1128,"date":"2016-03-17T10:31:34","date_gmt":"2016-03-17T10:31:34","guid":{"rendered":"http:\/\/www.pinsa.org.za\/?p=1128"},"modified":"2023-03-13T14:50:09","modified_gmt":"2023-03-13T14:50:09","slug":"ipopi-congress-report-budapest-2015","status":"publish","type":"post","link":"https:\/\/pinsa.org.za\/members\/ipopi-congress-report-budapest-2015\/","title":{"rendered":"IPOPI CONGRESS REPORT &#8211; BUDAPEST 2015"},"content":{"rendered":"<p><em><a href=\"\/\/www.pinsa.org.za\/report-ipic-2015-budapest\/\" target=\"_blank\" rel=\"noopener\">Click here to download the Word Version of this Report.<\/a><\/em><\/p>\n<p><strong>SESSION 1<\/strong> \u2013 PID\u2019s and Gastro-intestinal Issues<\/p>\n<p>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 \u2013 I think that delegates want to hear the problem and the resolution, not too much about the road to the solution.<\/p>\n<p><strong>SESSION 2<\/strong> &#8211; Autoimmunity in PID\u2019s<\/p>\n<p>Scientific and molecular basis of autoimmunity in PID\u2019s<\/p>\n<p>The Clinical management of autoimmune cytopenia\u2019s<\/p>\n<p>Managing lung complications in CVID \u2013 an autoimmune issue<\/p>\n<p><strong>SESSION 3<\/strong> &#8211; Focus on SCID<\/p>\n<p>This was one of the most interesting sessions I attended.<\/p>\n<p>The spectrum of Severe Combined Immunodeficiency defects \u2013 Prof. Bobby Gaspar<\/p>\n<p>SCID Treatment advances &#8211; Bone marrow transplant and Gene Therapy<\/p>\n<ul>\n<li>Newborn screening and the implementation thereof<\/li>\n<li>Gene therapy<\/li>\n<li>PID\u2019s treated by allogeneic hematopoietic stem cell transplantation<\/li>\n<\/ul>\n<p>SCID Newborn screening \u2013 an update by Prof Jennifer Puck<\/p>\n<p>SCID Newborn screening in Brazil \u2013 Prof Antonio Condino-Neto<\/p>\n<p><strong><u>INGID \u2013 NURSES SYMPOSIUM <\/u><\/strong><\/p>\n<p><strong>The important role of the nurse in Immunology<\/strong><\/p>\n<p><em>Nurse Sarita<\/em> Workman is a specialist Sister in Immunology Research at the Royal Free London Nasional Health Services Foundation Trust.\u00a0 She talked about her role of nursing in Immunology, her research while working and training others.\u00a0 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.\u00a0 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.<\/p>\n<p>A remarkable women, she is a natural speaker and I could hear that she did her training with ease.<\/p>\n<p><strong>\u00a0<\/strong><strong>Training patients for home therapy<\/strong><\/p>\n<p><em>Nurse Carla Duff<\/em> 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.<\/p>\n<p><strong>Setting up new services for PID patients, sharing knowledge and skills<\/strong><\/p>\n<p><em>Nurse Karin Ludwig<\/em> started off talking about medical care as a whole in South Africa.\u00a0 The problems that keep us from proper diagnoses and research.\u00a0 The state of the state hospitals and clinics and the negative attitude of some of the nurses working in the unhealthy environment.\u00a0 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.<\/p>\n<p>Nurse Karin Ludwig, together with her 2 children are SCID patients, she is a hands-on subcutaneous infusion nurses trainer.\u00a0 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.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-1131 size-medium\" src=\"https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Group-Dinner-300x224.jpg\" alt=\"IPIC 2015 Cruise Dinner \" width=\"300\" height=\"224\" srcset=\"https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Group-Dinner-300x224.jpg 300w, https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Group-Dinner-150x112.jpg 150w, https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Group-Dinner.jpg 567w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<p>IPIC 2015 Cruise Dinner<\/p>\n<figure id=\"attachment_1130\" aria-describedby=\"caption-attachment-1130\" style=\"width: 230px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-1130 size-medium\" src=\"https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Congress-230x300.jpg\" alt=\"Congress\" width=\"230\" height=\"300\" srcset=\"https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Congress-230x300.jpg 230w, https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Congress-115x150.jpg 115w, https:\/\/pinsa.org.za\/members\/wp-content\/uploads\/2016\/03\/Congress.jpg 435w\" sizes=\"auto, (max-width: 230px) 100vw, 230px\" \/><figcaption id=\"caption-attachment-1130\" class=\"wp-caption-text\">Congress<\/figcaption><\/figure>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><strong>SESSION 4 \u2013<\/strong> Management of infectious complications and immune dysregulation in PID\u2019s<\/p>\n<p>Biological agents in Primary Immunodeficiency<\/p>\n<p>Managing infectious complications in the developing world<\/p>\n<p>Immunisation and infections in PID\u2019s<\/p>\n<p><strong>SESSION 5<\/strong> \u2013 Oral presentations \/ Poster winners<\/p>\n<p>I attended this session with Nurse Carla Duff, member of INGID and nurse in Atlanta USA.\u00a0 She presented a poster on her husband who passed away 18 months ago.\u00a0 Unfortunately someone else won this award.<\/p>\n<p><strong>SESSION 6<\/strong> \u2013 The promises and pitfalls of new genetics<\/p>\n<p>New technologies identifying new gene defects in PID\u2019s<\/p>\n<p>Ethical perspective on genetics and PID\u2019s<\/p>\n<p><strong>SESSION 7<\/strong> \u2013 Registries:\u00a0 How to use them to advance clinical care<\/p>\n<p>Registries: From research to clinical practice<\/p>\n<p>ESID registry patient experience<\/p>\n<p><em>Jose Drabwell<\/em>, Chairperson for IPOPI in UK talked about her own experience that started in the late 90\u2019s after a delayed diagnoses of CVID.<\/p>\n<p>Registries are essential to society and are a major tool for public health policies.\u00a0 Data is also essential for research, also for national and international collaborative research.<\/p>\n<p>Patient representation:<\/p>\n<p>Must be involved at regular meetings<\/p>\n<p>Members must take part in decision making process<\/p>\n<p>Financial and strategic decisions<\/p>\n<p>Experience from United States \u2013 <em>Prof Jennifer Puck<\/em> talked about the newest project called \u201cFollowing infants with low lymphocytes\u201d FILL<\/p>\n<p>Experience from Africa \u2013 Dr Monica Esser discussed the issues in AFRICA \u2013 the vast environment and still a lot to do and establish.\u00a0 This is our challenge to train and equip doctors to early diagnoses of PID.\u00a0 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.<\/p>\n<p><strong>\u00a0<\/strong><strong>CONCLUSION<\/strong><\/p>\n<p>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.<\/p>\n<p>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.\u00a0 I also made some new friends and was privileged to meet other attendees and also some of the presenters whose sessions I attended.<\/p>\n<p>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.<\/p>\n<p><strong>ABBREVIATIONS<\/strong><\/p>\n<table>\n<tbody>\n<tr>\n<td width=\"90\">IPIC<\/td>\n<td width=\"607\">International Patients Immunodeficiency Congress<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">PID<\/td>\n<td width=\"607\">Primary Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">IPOPI<\/td>\n<td width=\"607\">International Patient Organization for Primary Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">SCID<\/td>\n<td width=\"607\">Severe Combined Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">CVID<\/td>\n<td width=\"607\">Common Variable Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">INGID<\/td>\n<td width=\"607\">International Nurses Group for Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">BMT<\/td>\n<td width=\"607\">Bone Murrow Transplant<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">PPTA<\/td>\n<td width=\"607\">Plasma Protein Therapeutics Association<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">PLUS<\/td>\n<td width=\"607\">Platform for Plasma Product Users<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">ASID<\/td>\n<td width=\"607\">Africa Society for Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">LASID<\/td>\n<td width=\"607\">Latin American Society for Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">NHS<\/td>\n<td width=\"607\">National Health Services<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">SLT<\/td>\n<td width=\"607\">Speech and Language Therapy<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">ESID<\/td>\n<td width=\"607\">European Society for Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">ICH<\/td>\n<td width=\"607\">Institute of Child Health<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">PICU<\/td>\n<td width=\"607\">Paediatric Intensive care Unit<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">XLA<\/td>\n<td width=\"607\">X-Linked agammaglobulinemia<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">TRECs<\/td>\n<td width=\"607\">T-cell Receptor Excision Circles<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">KRECs<\/td>\n<td width=\"607\">Kappa-deleting Recombination Excision Circles<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">GA<\/td>\n<td width=\"607\">Gestational Age<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">BW<\/td>\n<td width=\"607\">Birth Weight<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">DBS<\/td>\n<td width=\"607\">Dried Blood Spots<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">WASP<\/td>\n<td width=\"607\">Wiskott-Aldrich Syndrome<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">WIP<\/td>\n<td width=\"607\">WASP Interacting Protein<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">LAD<\/td>\n<td width=\"607\">Leukocyte Adhesion Deficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">PIDD<\/td>\n<td width=\"607\">Primary Immunodeficiency Diseases<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">CGD<\/td>\n<td width=\"607\">Chronic Granulomatous Disease<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">SCIG<\/td>\n<td width=\"607\">Subcutaneous Immunoglobulins<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">IVIG<\/td>\n<td width=\"607\">Intravenous Immunoglobulin<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">HIV<\/td>\n<td width=\"607\">Human Immunodeficiency Virus<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">BTK<\/td>\n<td width=\"607\">Bruton Tyrosine Kinase<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">COPD<\/td>\n<td width=\"607\">Chronic Obstructive Pulmonary Disease<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">CCI<\/td>\n<td width=\"607\">Centre for Chronic Immunodeficiencies<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">UKM<\/td>\n<td width=\"607\">University Kebangsaan Malaysia<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">SEAPID<\/td>\n<td width=\"607\">South East Asia Primary Immunodeficiency<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">NIH<\/td>\n<td width=\"607\">National Institute of Health<\/td>\n<\/tr>\n<tr>\n<td width=\"90\">CRRDC<\/td>\n<td width=\"607\">Centre for Research in Rare Diseases in Children<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Find out 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