A picture of IPOPI's national member organisations standing in a group, looking up in the air and lifting their hands in a celebratory way.

IPOPI celebrates 70 members!

We are excited to share the news of reaching a significant milestone: the IPOPI family has now grown to 70 members! We extend a warm welcome to the Lithuanian Society of Primary Immunodeficiencies (IMUNAS), as the latest member of our network of national member organisations.

Patient organisations play a crucial role in enhancing access to early diagnosis, optimal treatment, and ultimately the quality of life for individuals affected by primary immunodeficiencies (PIDs). Our members act as essential sources of support, empowering patients with information and resources, while amplifying the voice of PID patients within their country. With Lithuania’s inclusion, IPOPI extends its boundaries, uniting patient groups to collaborate with stakeholders for improved care and support worldwide.

Are you interested in starting a PID patient organisation in a country where there is none?

We encourage individuals and groups passionate about making a difference to consider establishing their own national PID patient organisation. We invite you to reach out to us at miriam@ipopi.org.

Together, we can create a more impactful network, advocate for change, and ensure that PID patients around the world receive the support and recognition they deserve.

Let’s continue to build on this momentum and drive positive change for the PID community!

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The PID Odyssey 2030: outlooks, unmet needs, hurdles, and opportunities

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The IPOPI Global Multi-Stakeholders’ Summit in 2022 marked a pivotal moment for the Primary Immunodeficiency (PID) community, fostering forward-thinking discussions among stakeholders to shape the future priorities of PID care. In this article, we’re excited to share the comprehensive recommendations that emerged from this groundbreaking summit.

From newborn screening to curative therapies

During the summit, various topics were discussed, including:

  • Diagnosis: This covered areas like newborn screening, genomic sequencing (including ethical considerations of genomics on newborn screening), and the impact of accurate diagnostics on personalised management.
  • Treatment: This section explored the evolution of immunoglobulin therapies on a global scale, novel treatments like targeted therapies, and innovative approaches to curative therapies.
  • Disease crossovers: The interactions between Primary Immunodeficiencies (PID) and Secondary Immunodeficiencies, as well as Autoinflammatory Diseases and other evolving conditions in the field, were explored.
  • Research Avenues: The summit also delved into research possibilities in humanities and human sciences, including Patient-Reported Outcome Measures (PROMs), Patient-Reported Experience Measures (PREMs), and Health-Related Quality of Life (HRQoL).

Experts, physicians, scientists, patients, and representatives from across the globe came together during the summit to discuss the environment for PID patients in the upcoming decade. Through this collaborative effort, we aim to pave the way for improved PID diagnosis and care, by building upon the shared understanding of challenges, opportunities, and scenarios discussed during the summit.

Read the full article here.

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IPOPI’s 2022 Review of Activities and Achievements

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2022 was a very special year for IPOPI, as we celebrated our 30th anniversary as an organisation! We had the pleasure of celebrating this milestone at the Global Patients’ Meeting in Gothenburg, Sweden, together with over 100 patient advocates from 34 countries. During this festivity, we seized the opportunity to appreciate current and successive Board and Staff members, who all have played an integral role in shaping IPOPI’s journey. As an organisation, we are proud to work with and represent a growing number of national member organisations who all share our common vision to improve the lives of these patients with primary immunodeficiencies (PIDs).

2022 Highlights: A strong educational programme

In 2022, IPOPI organised various events and engaged in campaigns and policy efforts to improve care for patients with PIDs. Aligned with our strategic plan for 2021-2025, we remained steadfast in delivering a robust educational programme that empowers both patient advocates and healthcare professionals alike. A notable example is the 5th International Primary Immunodeficiency Congress (IPIC), which took place in Vilamoura, Portugal, in April 2022. This congress brought together 600 delegates interested in the diagnosis and clinical care of primary immunodeficiencies (PID), an outstanding achievement!

Throughout the year, we have also released a motion design video series covering primary immunodeficiency diagnosis and treatment, and published six new educational PID leaflets. In addition to this, we organised several EU PID Forums in the European Parliament, as well as a successful Asian regional meeting in Kuala Lumpur (Malaysia), a well-attended national meeting in Bangkok (Thailand), and of course, our Global Patients’ Meeting, organised back to back with the ESID congress.

We have continued our support for stakeholder cooperation in initiatives like Screen4Rare and ERN-Rita and started new collaborations with organisations such as United Nations Institute for Training and Research (UNITAR) and European Alliance for Transformative Therapies (TRANSFORM), among others.

We hope you will enjoy reading this annual report and exploring the most significant IPOPI initiatives, campaigns, and events in the previous year.

Explore the annual review

 

 

 

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PIDetect: Enhancing PID Diagnosis

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