IPOPI statement on the Council’s SoHO position

Read more
/by
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!

/by

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

,

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.

/by