GENIE – A Portuguese association for autoimmune encephalitis research and care

By Ana Vasconcelos (GENIE member)

On January 24th, at the University of Coimbra (Portugal), we celebrated the official
launch and inaugural meeting of GENIE – Grupo de Estudos em
Neuroimunologia e Encefalites (translated as Neuroimmunology and Encephalitis
Study Group).

GENIE is a Portuguese association dedicated to raising awareness, conducting and
disseminating research, fostering collaborations, and providing care and support for
people affected by autoimmune encephalitis. It aims to bring together scientists,
healthcare professionals, patients, and caregivers to improve healthcare and
communication about autoimmune encephalitis.

This initiative was founded by a group of researchers from CNC-UC – Centre for
Neuroscience and Cell Biology of the University of Coimbra. At CNC-UC, we are
committed to researching and raising awareness about autoimmune encephalitis in
the Portuguese population. As researchers and science communicators we strongly
believe in the words of American psychologist Anne Roe: “Nothing in science has
any value to society if it is not communicated”. In Portugal, as in worldwide,
autoimmune encephalitis remains poorly understood. We believe GENIE can play a
key role in changing this reality.

GENIE’s official launch was marked by an inaugural meeting featuring a full-day
programme packed with presentations, discussions and workshops. The event
gathered an interdisciplinary audience of around 40 professionals, including
neurologists, psychiatrists, hospital pharmacists, scientists, and science and health
communicators. This diverse group fostered dynamic discussions and laid the
groundwork for future research collaborations.

The programme began with a presentation by Dr. Ester Coutinho, the coordinator
and driving force behind GENIE. Dr. Coutinho introduced GENIE’s goals and
mission, as well as the website encefalites.pt which will be officially launched on
World Encephalitis Day (WED). This website will provide resources—including
illustrations, pamphlets, and animations—for medical professionals, patients, and
caregivers.

The morning continued with insightful clinical and scientific presentations presented
by neurologists and researchers working in this field. The goals of these projects
included improving characterization and diagnosis of autoimmune encephalitis,
unravelling new antigens in seronegative autoimmune encephalitis, and exploring
the pathogenic mechanisms in autoimmune encephalitis, particularly in anti-CASPR2
and anti-IgLON5 encephalitis.

In the afternoon, attendees participated in one of two parallel workshops focused on
communicating autoimmune encephalitis. The first was a brainstorming session,
where participants were challenged to generate ideas for how GENIE could
celebrate WED 2026. The second was a collaborative session for medical
professionals, aimed at co-creating illustrated medical pamphlets to aid
communication between clinicians and people affected by autoimmune encephalitis.

At GENIE, we believe this was the first of many successful meetings. Moving
forward, we aim to organize future gatherings and activities that include patients and
caregivers, reinforcing our core mission: raising awareness in Portuguese society
and improving care for autoimmune encephalitis patients.

Long live GENIE!