After three years of dedicated work, international collaboration, and continuous dialogue with clinicians, researchers, and the patient community, APACS is proud to announce the release of our Position Paper on the creation of a European EGPA Foundation.

This strategic document — now officially endorsed by the European EGPA Study Group (EESG) and our entire Scientific Board — marks a crucial milestone in building a stronger, more transparent, and unified European representation for people living with Eosinophilic Granulomatosis with Polyangiitis (EGPA).

📄 What the Position Paper Covers

Developed from the recognition that EGPA is a rare and highly complex disease—distinct in its clinical and scientific characteristics from other ANCA-associated vasculitides—the Position Paper outlines the need for a dedicated European structure capable of:

  • providing a single, authoritative patient voice at the European level,
  • promoting collaborative research and innovation,
  • improving equitable access to care, especially to biologic therapies still unevenly available across Europe,
  • ensuring a transparent, inclusive, patient-centered governance model,
  • supporting and empowering existing national groups without imposing any federative structure.

The document details the vision, governance structure, and operational model of the future European EGPA Foundation, inspired by best-practice European organizations and designed as an open platform for patients, caregivers, clinicians, researchers, and institutions.

🔬 A Scientifically Grounded Initiative

The involvement of the EESG as the Foundation’s scientific pillar ensures expertise, rigor, and independence — essential elements for addressing the clinical and therapeutic challenges of EGPA.

🌍 Soon to Be Published and Sponsored

The Position Paper is now moving toward official publication and a sponsorship pathway, aiming to accelerate the formal establishment of the Foundation and to activate its priority areas: advocacy, patient empowerment, research collaboration, and engagement with European institutions.

For APACS, this marks the beginning of a new phase: more European, more collaborative, and more ambitious.
We will continue working to ensure that every person with EGPA in Europe feels represented, informed, and supported.

For further information: info@apacs-egpa.org