New ePAG Advocates for APS and IgG4

ERN ReCONNET is delighted to announce the addition of two new ePAG Advocates to its patient community: Alexander Patsalias and Jamy Scheerhoorn-Pullen.

Jamy Scheerhoorn-Pullen steps in as the ePAG Advocate for Antiphospholipid Syndrome (APS).

Jamy is an engaged member of the NVLE (Dutch Association for Patients with Rare Connective Tissue Diseases), focusing on patient participation, and also serves on the board of the NVLE Fund, supporting young researchers in the field.

As both a patient and caregiver, Jamy brings a deeply personal and insightful perspective to her role, passionately advocating for stronger patient involvement in healthcare decisions. Her guiding motto is: “Love, Laugh, Dream.”

Alexander Patsalias joins as the ePAG Advocate for IgG4-related disease (IgG4-RD).

As a passionate advocate, Alexander has been active at Erasmus MC and is currently launching a European Patient Federation focused on IgG4-RD.

With a professional background in strategic sales and change management, he brings a valuable blend of lived experience and business acumen to patient advocacy.

Alexander is deeply committed to strengthening collaboration across borders and ensuring timely, expert care for all IgG4-RD patients in Europe.

Their voices, expertise, and dedication will further enrich ERN ReCONNET’s mission to advance care for people living with rare and complex connective tissue diseases.

Meet all our Patient Representatives here: click here