22nd-29th April 2024

The Map of PID Advancements aims to showcase the remarkable progress made globally in the field of Primary Immunodeficiency (PID) care. It serves as a window into a variety of examples of best practices, in awareness raising, advocacy, and significant policy advancements that have contributed to improving access to care for individuals with PID across diverse regions.

As we honor each milestone, this map offers a glimpse into the collective journey undertaken by stakeholders worldwide in recent years. It underscores the invaluable contributions of countless initiatives that, while not featured here, persistently champion the cause of improving PID care on a global scale.

From April 22nd to April 29th, 2024, World PI Week will feature daily highlights on social media. These will spotlight case studies and promote global awareness of the strides being made to ensure accessible PID care for everyone, everywhere.

Let us use this opportunity to celebrate the dedication and innovation driving progress in PID care, and express our profound appreciation for the tireless efforts of individuals and organizations worldwide. Together, let’s continue to push boundaries and work together towards a future where we achieve: Access to Care for all PID patients, everywhere. Let’s make early diagnosis and timely access to quality treatment a reality worldwide

Argentina

UNITAR – IPOPI collaboration

2023

This new partnership between UNITAR and IPOPI shows a dedicated commitment to working together to enhance global access to plasma-derived therapies.

The United Nations Institute for Training and Research  (UNITAR) offers innovative educational solutions to individuals, organisations, and institutions, aiming to strengthen global decision-making and facilitate country-level efforts in shaping a brighter future.

UNITAR’s mission is to enhance individual and institutional capacities, fostering better decision-making and facilitating country-level action to address global challenges.

The collaboration also covers Malaysia.

unitar

IPOPI

Bangladesh

PIDetect: Enhancing PID Diagnosis in Low- and Middle-Income Countries

2022-2023

Primary immunodeficiencies (PIDs) are believed to affect around 6 million people worldwide, but 70 to 90% of patients do not have access to proper care. The key factor behind these numbers is a low diagnosis rate, particularly in low- and middle-income countries (LMIC). To address this problem, IPOPI has launched the PIDetect programme, which provides intensive training to selected doctors from LMIC to improve their skills in recognising and diagnosing PIDs. The programme is hosted in a PID reference centre and is aimed both at clinicians and laboratory scientists with an interest in PIDs. It comprises intensive clinical and/or laboratory training tailored to the individual needs and background of each attendee, followed by a local implementation activity whereby the acquired expertise is shared more widely with doctors in the target country.

IPOPI

Moldova

PIDetect: Enhancing PID Diagnosis in Low- and Middle-Income Countries

2023

Primary immunodeficiencies (PIDs) are believed to affect around 6 million people worldwide, but 70 to 90% of patients do not have access to proper care. The key factor behind these numbers is a low diagnosis rate, particularly in low- and middle-income countries (LMIC). To address this problem, IPOPI has launched the PIDetect programme, which provides intensive training to selected doctors from LMIC to improve their skills in recognising and diagnosing PIDs. The programme is hosted in a PID reference centre and is aimed both at clinicians and laboratory scientists with an interest in PIDs. It comprises intensive clinical and/or laboratory training tailored to the individual needs and background of each attendee, followed by a local implementation activity whereby the acquired expertise is shared more widely with doctors in the target country.

IPOPI

Indonesia

Access to IVIG reimbursement

2024

Due to advocacy campaigns of the patient group and physicians, currently, IVIG is reimbursed with partial reimbursement of the treatment (up to 7.5 gram of IVIG), however there are recent successes in getting full reimbursement of the treatment in a top referral hospital.

IPIPS

Malaysia

Seven Clinical Immunologists Request Subspecialist Recognition To Tackle Complex Primary Immunodeficiencies (PID)

Clinical immunologists request recognition as subspecialists to improve diagnosis and treatment. This serves as a basis of MyPOPI advocacy efforts with the Ministry of Health, being able to have access to two adult physicians.

MyPOPI

Morocco

PID Classification mobile app

A mobile app to help physicians diagnose and classify primary immunodeficiencies (PIDs).

The app’s aim is to help physicians better understand PIDs and it will especially be valuable for physicians who do not see many PID patients.

The app comprises several sections:

  • Classification of PIDs
  • Search a disease by name and by manifestation
  • A method on how to diagnose PID tailored for developing countries
  • Normal range values (trough levels, immunoglobulins)
  • A glossary

The December issue of the Journal of Clinical Immunology included an article about the app and its launch was announced at the 1st Maghreb and 9th Moroccan PID Congress in Casablanca

ASID

HAJAR

Canada

National Immunoglobulin replacement Expert Committee recommendations

2017

Publication outlining Immunoglobulin replacement recommendations made by Immunodeficiency Canada’s National Immunoglobulin Replacement Expert Committee. These guidelines for Immunoglobulin replacement therapy were formulated by experts across Canada, and accepted and implemented by our Ontario Ministry of Health for treatment of PID patients with hypogammaglobulinemia.

Mexico

The Ball is in your Court

2018 & 2020

Campaign carried out by Fumeni to achieve the guarantee of the Right to Health Protection for Individuals with Primary Immunodeficiencies through timely and comprehensive access to necessary medical treatments, calling for the inclusion of PIDs as part of national “wellbeing funds” to ensure additional reimbursement treatments for patients without insurance.

Fumeni

Latin America

Launching the new LASID Registry Platform

2021

The LASID Registry collects basic information about the diseases affecting patients in every participating country. Specific information regarding the clinical and laboratory presentation of most PID is entered by the participating centres, and basic statistics are generated about every two months containing not only the number of patients and their diseases, but also the degree of input from every centre registering the patients. The core of the Registry is to serve as a platform that will foster clinical research on the different aspects of PID such as epidemiology, the genetic basis of these diseases, diagnosis and treatments, amongst others. In addition, the Registry collects information about the use of immunoglobulin replacement therapy for the different diseases.

LASID

United States

Newborn Screening for SCID Approved in all states

2018

Effort of decades led by JMF & IDF to get newborn screening for SCID approved in all states. State by state, IDF worked with local organisations, legislators, and statewide public health officials to break down the barriers and add SCID to the newborn screening panel in each state. IDF recently began work under a grant from the Health Resources and Services Administration (HRSA) to launch a 2-year programme – SCID Compass – to improve outcomes for infants with SCID detected through newborn screening.

JMF

IDF

United Kingdom

Patient’s experience survey of Primary Immunodeficiency Disorders (PID) services

2016- 2023

Over the course of 3 months (March-May 2016) those affected by PID in the UK were asked to answer questions about their experience of diagnosis and treatment. A total of 303 responses were collected.

The results of the survey highlight the importance of early diagnosis and providing access to different treatment options and modes of administration to ensure individual patient needs are best met. The findings have important implications for all users of the data, and particularly for NHS policy makers, commissioners and providers and will guide Immunodeficiency UK in its work to improve the quality of care for everyone living with PID

Immunodeficiency UK

Netherlands

Launch of PID Expertise Network

2023

This expertise network consists of the seven university medical centers in the Netherlands. Of these, five hospitals are recognized as centers of expertise for PID.

Doctors, nurses and paramedics from the network work together on the best diagnosis, treatment and guidance of children with primary immunodeficiencies. The network is committed to international cooperation and scientific research.

Stichting voor Afweerstoornissen (SAS) Foundation for Immune Disorders

Australia & New Zealand

First national Immunodeficiency Strategy (focused on PIDs)

29 April 2022

ASCIA has worked in collaboration with patient organisations IDFA, AusPips, IDFNZ and HAE Australia and other stakeholders to develop the Strategy. The first goal is to enable early diagnosis of severe combined immune deficiency (SCID) by newborn screening of the Australian population.

Following the Strategy launch and advocacy by patient organisations, the formal recommendation for SCID to be included in Australian Newborn Bloodspot Screening Programs was recently announced in a media statement by the Australian Government https://lnkd.in/dYk4jRvi

ASCIA

IDFNZ

HAE Australia

Highlights from all over the World Archives - World PI Week

We encourage the community to continue sharing highlights from their regions on our dedicated page. Your contributions help us build a comprehensive resource showcasing global advancements in PID care and advocacy. Together, let's ensure that every success story finds its place on the map.