Highlights from all over the world

Want to know more about the national member organisations involved in WPIW and their activities? This section provides you with news of PI stakeholders from around the world.

IPOPI publishes a new series of PID leaflets

April 2018 

IPOPI has since 2011 been producing primary immunodeficiencies (PID) information leaflets and a new series has just been published. This last series comprises 3 leaflets dedicated to: ‘PIDs and infections’, ‘PIDs and allergies’ and ‘PID and psychological management’, all with very helpful information and guidance for patients, their families and extended community.

  • ‘PIDs and infections’ covers the range of infections that can affect people with primary immunodeficiencies and how they can best be prevented and treated.
  • ‘PIDs and allergies’ explains why some primary immunodeficiencies are linked with allergies and how these allergies can best be handled.
  • ‘PIDs and psychological management’ looks in detail at the psychological impact that PIDs can have, in children, parents and in adult patients, suggesting various coping mechanisms and highlighting many sources of support.

IPOPI is pleased to make these leaflets freely available in English and expects new translated versions to be available soon with the invaluable help of its national member organisations. You can find them and all other editions of IPOPI leaflets in ebook and pdf versions on the IPOPI website. Sample hard copies can be requested to info@ipopi.org. IPOPI wishes to thank Shire for their support towards the production of the new edition of leaflets!


IPOPI launches PID GENIUS, the personal assistant to PID patients

April 2018

IPOPI, the International Patient Organisation for Primary Immunodeficiencies, has launched PID GENIUS, the first mobile application developed by a patient organisation for people with primary immunodeficiencies (PIDs) for worldwide use. This project has been made possible thanks to the support of Kedrion Biopharma and is now available for download at the Apple App Store and on Google Play. PID GENIUS is the personal assistant to PID patients in search of an easy and dynamic way of keeping track of their treatments, day-to-day symptoms, vaccinations, contacts, most important documents. PID GENIUS also offers the possibility of displaying stored information in dashboards, facilitating discussions between patients and their medical specialists. “We hope that with this mobile application, people living with PIDs will see the management of their day-to-day life and treatment become simpler and easier to follow up, sparing them the trouble of managing with a big bulk of files”, said Jose Drabwell, from IPOPI. This app is now registered worldwide. The language of the app is English and will soon be translated also into other languages. PID genius complies with the European community regulation which is considered as one of the most rigorous legislations on personal data protection worldwide. See the App tutorial on Youtube!

Immune Deficiency Foundation: Fighting for SCID Newborn Screening in the U.S

March 2018

The World PI Week 2018 campaign focuses on early testing and diagnosis of primary immunodeficiency diseases (PI). The Immune Deficiency Foundation (IDF), the national nonprofit organization in the U.S. dedicated to people with PI and proud member of the World PI Week Steering Committee, has worked to improve diagnosis of these rare, chronic diseases in the U.S., particularly over the past several years through implementation of newborn screening for Severe Combined Immune Deficiency (SCID), which is the most severe of the primary immunodeficiencies.

Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive. SCID has been characterized in the medical community as a pediatric emergency.

IDF has strongly supported and worked to ensure every state in the U.S. includes SCID on their newborn screening panel since the U.S. Department of Health and Human Services announced the addition of SCID to the recommended uniform screening in 2010. This year, IDF will continue its campaign for all 50 states to add SCID to their newborn screening panels. The number of states currently screening is 47 states; therefore 94% of all newborns in the U.S. are receiving SCID screening. IDF is continuing its efforts in Alabama, Indiana and Louisiana with the aim of having all 50 states screening by the end of 2018. IDF looks forward to further research and development allowing for screening of additional disorders in the future, including the KREC test for X-linked Agammaglobulinemia. Newborn screening for SCID is lifesaving. With this early diagnosis and proper medical care, many patients live full and independent lives.

To learn about SCID and newborn screening, go to: www.primaryimmune.org/idf-scid-center 

Getting ready for World PI Week 2017 - International Patient Organisation for Primary Immunodeficiencies (IPOPI)

April 2017

IPOPI and the primary immunodeficiency (PID) community are pleased to hold the 2017 World Primary Immunodeficiencies Week (WPIW) from April 22 to 29 to raise awareness about PIDs! There are close to 300 identified PIDs affecting an estimated six million people all around the world, many of which remain undiagnosed.

Under the motto ‘Test. Diagnose. Treat.’ IPOPI has been collecting video patient testimonials from several countries (subtitled in English), giving patients the opportunity to share their unique experiences and raise awareness of the specific needs of these conditions.

The latest set of testimonials released features Portuguese patients and their families.

Two sisters living with CVID take us through their shared experience of diagnosis and treatment,mother and her daughter discuss the impact of impact of growing up with a PID and two patients both living with CGD but diagnosed at very different times tell their stories highlighting the importance of early diagnosis.

In the next few days, IPOPI will be launching additional videos featuring a parent’s perspective on SCID and her child undergoing BMT and a man living with XLA who highlights the professional life difficulties of a chronic patient.

Immunoglobulin replacement therapy

This year’s WPIW has a special focus on immunoglobulin (IG) replacement therapy: ‘Ensuring Access to Immunoglobulin Replacement Therapies for Patients with Primary Immunodeficiency’. IGs are lifesaving and lifelong therapies for the majority of PID that should be made available to all PID patients. IGs help patients fight off life threatening infections and live their life to the fullest and are listed as Essential Medicines by the World Health Organization (WHO).
Two years ago IPOPI led a Working Party of specialists to develop the “Primary Immunodeficiencies Principles of Care” which outlines the 6 key principles that should be in place in each country and region to provide a "gold standard" framework for the diagnosis and care of primary immunodeficiencies (PIDs). This includes specific principles on management of the conditions and treatment options.

WPIW European Parliament event - International Patient Organisation for Primary Immunodeficiencies (IPOPI)

April 2017

IPOPI will be hosting its 2nd WPIW policy event in the European Parliament on April 25 dedicated to ‘Availability and access to immunoglobulin replacement therapies’.
The meeting will be chaired by Member of the European Parliament (MEP) Dr Tanasescu and important issues related to PID treatment and disease management will be addressed. Patients and physicians will highlight the priorities in Europe, in the Balcans, Russia, Africa and Asia and a nurse will bring the nursing perspective. A representative from the European Medicines Agency (EMA) will be attending to provide the regulatory perspective on these lifesaving therapies.
IPOPI has been closely monitoring the Implementation of the PID Principles of Care and will present some preliminary results of a new survey at the event.
Two years ago IPOPI led a Working Party of specialists to develop the “Primary Immunodeficiencies Principles of Care” which outlines the 6 key principles that should be in place in each country and region to provide a "gold standard" framework for the diagnosis and care of primary immunodeficiencies (PIDs). This includes specific principles on management of the conditions and treatment options.

Fighting for Access to Life-saving Immunoglobulin - Immune Deficiency Foundation (IDF)

March 2017

A proud member of the World PI Week Steering Committee, the Immune Deficiency Foundation (IDF) is the national non-profit organization in the U.S. dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy, education and research. This World PI Week, the campaign focuses on ensuring access to life-saving immunoglobulin (Ig) replacement therapy—something IDF has been fighting for in the U.S. for many years.

Ig therapy is one of the most important and successful therapies for people with PI. On the IDF website, www.primaryimmune.org, the most viewed page over the last two years is the treatment information on Ig therapy with 256,248 page views. The most frequently asked questions at IDF Education Meetings are in regards to Ig therapy. From the 2012 IDF survey, IDF Primary Immune Deficiency Diseases in America, approximately 75% of patients surveyed are treated with Ig therapy.

Advocating for the Community

Because so many people living with PI depend on lifelong Ig therapy, IDF’s advocacy efforts focus on access to this lifesaving treatment. The Foundation works to knock down barriers to proper treatment and care. As more insurance companies attempt to manage and even curb the use of Ig therapy in people with PI, IDF continually expands its advocacy education programs through increased emphasis on state legislative and insurance issues. The Foundation collaborates with other patient organizations on public policy and legislative matters to leverage its resources on federal and state healthcare issues.

Private insurance denial of Ig therapies and patterns of cost shifting to patients is attracting more attention and has the capacity to minimize the problems currently faced by Medicare beneficiaries in the U.S. In addition, with the changes that the Affordable Care Act (ACA) has had on the overall healthcare system and the PI community, it is clear that the need for IDF advocacy is critical now more than ever. IDF believes that healthcare professionals, in consultation with their patients, should make decisions about care and changes in treatment. Currently, IDF is working with other organizations to advocate for our community and others with rare, chronic diseases as the U.S. government looks to repeal the ACA. We also are working to ensure that Medicare beneficiaries have access to subcutaneous Ig therapy (SCIG), which has become a concern because of changes in reimbursement. As a result of the 21st Century Cures Act, there will be a large scale disruption to care for Medicare beneficiaries whose lives depend on access to such lifesaving treatments.

IDF employs successful advocacy tactics to include cultivating relationships with legislators and Members of Congress, and meeting with and providing policy comments to government officials to increase awareness of issues important to the PI community, particularly access to Ig therapy. In 2017, IDF will host its annual IDF Advocacy Day on Capitol Hill during World PI Week.


Patient education is central to the mission of IDF. The Foundation offers a full spectrum of educational publications developed by experts for individuals, families and healthcare professionals, many of which address Ig therapy, including the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, 5th Edition, IDF Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases, 3rd Edition and the IDF Clinical Focus Subcutaneous Immunoglobulin Replacement. IDF does not charge individuals or healthcare professionals for materials, which are available for order or download from the IDF website.

Each year IDF holds educational programs throughout the U.S. featuring sessions from experienced healthcare professionals and life-management experts. Ig therapy is a regular topic of discussion, offering unique opportunities for people with PI to ask questions and meet others going through similar experiences.

Year round, online and by phone, IDF answers inquiries and assists individuals and families living with PI with a broad array of questions related not only about Ig therapy but also regarding diagnosis, treatment, health insurance, peer support, physician location and literature requests, among other topics. Each year, IDF receives more than 4,000 requests, including hundreds of questions about Ig therapy.


To provide data about PI, IDF has conducted more than 40 major surveys of patients and healthcare professionals since 1995. IDF survey data has been used effectively with the government in quantifying the impact of the Ig shortage several years ago, in helping change clinical trial design, and more recently in demonstrating the impact of reimbursement changes on patient care. This data is used by immunologists and other physicians in educational sessions that outline patient treatment and diagnosis experiences, as well as by industry in understanding the demand for, and efficacy of Ig therapy. IDF survey data is often cited in medical journals, government sponsored reports, by media and has been the basis of several articles in peer-reviewed journals.

IDF has conducted National Treatment Surveys in the U.S. (1997, 2003, 2008, 2013). Released in 2013, the National Treatment Survey and SF 12, a survey that is a valid measure of physical and mental health, taught IDF what experiences the PI community faces with Ig therapy, including intravenous immunoglobulin (IVIG) and subcutaneous immunoglobulin (SCIG). That data illustrated that proper diagnosis and therapy can be a tremendous benefit to those with PI. 61% of those who were diagnosed with a PI and currently on Ig therapy reported their general health as good or better, compared to only 15% who reported their health as good or better prior to diagnosis and treatment for their PI. 55% of those surveyed were using IVIG, and 45% were using SCIG.

IDF provides the data that has a measurable impact on the conversation surrounding people with PI and the treatments they rely upon.

Through advocacy, education and research, IDF works to ensure that all individuals and families living with PI have access to life-saving Ig therapy.

The #PIechallenge campaign - Immunodeficiency Canada

January 2017 

Immunodeficiency Canada’s social media accounts are filled with photographs of individuals, staff, and donors smiling at events like the annual Scotiabank Toronto Waterfront Marathon/5k and World PI Week. Recently, the accounts have been taken over with pictures of pie. We have pumpkin pies, apple pies, peach pies, blueberry pies, chocolate pies, and even a pizza pie. The pies have been showing up since October, and the pictures keep coming in.

The delicious creations were made for Immunodeficiency Canada’s ongoing campaign the #PIechallenge. The #PIechallenge involves baking a homemade pie and posting the photo on social media, along with Immunodeficiency Canada’s copy/paste instructions. After baking the pie, the participant nominates three friends to do the same and donates $5.00 for the cause. Baking enthusiasts, food bloggers, and corporate sponsors are showing their support for the cause. We have already raised $1,605.00 with the campaign.

The #PIechallenge campaign goes on until March 14th, 2017, when Immunodeficiency Canada will congratulate all the magnificent donors and submissions. Social media followers can vote on their favourite pies and the top three winners will be awarded prizes. The final event will be a time to celebrate, and of course, eat more pie.

For more information on the PIechallenge and Immunodeficiency Canada please visit www.immunodeficiency.ca 

About Immunodeficiency Canada: Immunodeficiency Canada is a registered charity. Our core work is divided 30% patient support and 70% working with the scientific community on education and research. With the help of dedicated staff, volunteers, and donors, we have accomplished incredible things for Canadians with PI. We have secured newborn screening for Severe Combined Immunodeficiency (SCID) in the provinces of Ontario, Nova Scotia, New Brunswick, and PEI. We have provided emergency financial support to families with a child in a hospital at six centres across the country. Individuals seeking diagnosis have been referred to immunologists. Our network of physicians and healthcare centres participates in quarterly PI Webcast discussing difficult cases, attends conferences and works together on research projects. We support fellows in training. We are a leader with a social workers network addressing the psychological issues of living with PI.