Impatient Brains

Why…

VISION

Strengthen the alliance between patients, doctors, and institutions to build a care relationship.

MISSION

Improve the quality of life for people with AE by ensuring the proper dissemination of information and promoting an integrated multidisciplinary scientific approach in research and care activities.

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The Association pursues the following objectives:

  • Implement policies to support individuals affected by AE and their families, ensuring that families are not the sole care/case managers for patients, particularly in the case of minors;
  • Protect individuals affected by AE by facilitating access to services and information necessary to guarantee their rights as patients and promote their inclusion in school and work environments;
  • Support and promote scientific research through rigorous scientific methods to consolidate results within mainstream medicine;
  • Promote, by actively participating in public debate, the discussion and dissemination of information on health, welfare, and social issues, contributing to mitigating or reducing the lack of medical or health information;
  • Support and promote scientific research through rigorous scientific methods to consolidate results within mainstream medicine;
  • Promote awareness and study of these diseases to raise public awareness and encourage national, European, and international institutions to develop Integrated Diagnostic-Therapeutic-Assistance Pathways (PDTA) with the goal of improving health conditions and quality of life, while safeguarding the rights of patients, families, and caregivers in appropriate venues;
  • Advocate for the legislative recognition of free access to treatments and medications by supporting the inclusion of rare immune disorders of the central nervous system in both the Essential Levels of Assistance (LEA) and the National Chronicity Plan, and promoting nationwide diagnosis and therapy;
  • Promote and support the inclusion of these syndromes in the National Rare Disease Registry, given their prevalence, to improve the mapping of cases across the country and facilitate the collection of epidemiological, clinical, and healthcare data regarding these conditions;
  • Raise awareness of treatment advancements and best practices adopted in other countries, help understand the needs of patients and their families, encourage transparency and clarity in communicating methodologies, protocols, cases, and short- and long-term results, and foster the creation of specific care pathways;
  • Promote the adoption of national and international guidelines for rare immune disorders of the central nervous system, developed in collaboration with health and social workers, patient associations, and their families;
  • Encourage public entities to ensure that emergency medical personnel are trained to promptly recognize and diagnose the condition and provide accurate and timely guidance.

WE ARE:

Board of Directors

Elisa Elmi

Elisa Elmi

President

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For 26 years, she has been involved in training and project design, working across various sectors with different scopes and organizations. She helps entrepreneurs, professionals, and organizations bring projects to life and supports them in achieving their goals. She works out of interest and passion and has learned that experience is worth more than a career. Rigorous in achieving results but welcoming towards people, she strongly believes in the value of relationships and prioritizes projects focused on enhancing people, sustainability, and inclusion—not just declared, but practiced with example and authenticity.

Maria Clivia Losana

Maria Clivia Losana

Vice President

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Born in Turin but raised in the Pinerolo area. After attending the Scientific High School in Pinerolo, she studied Physics at the University of Turin and later completed the School of Specialization in Health and Environmental Physics at the University of Bologna.

For over twenty years, she has worked at Arpa Piemonte (Regional Environmental Protection Agency), focusing on environmental radioactivity at the Ivrea office, specifically in laboratory analysis of water intended for human consumption, data analysis, and reporting. She is the author of articles in international journals and has participated, also as a speaker, in numerous conferences. She currently lives near Ivrea with her husband and three children.

Massimo Beretta Liverani

Massimo Beretta Liverani

Secretary Treasurer

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Born in 1969, PhD in Historical Studies with a thesis in Greek History, he is a senior manager at a major institution in Turin after beginning his career in the banking sector. He provides support and liaison activities, handling reporting and planning documents. His experience includes various administrative tasks, managing complex projects, and staff organizational skills, even during significant events, notably the Turin 2006 Winter Paralympics. For many years, he has been an administrator of a prominent Turin-based research organization operating nationally, focused on evaluating the impact of private and public policies.

scientific committee

Alessandro Cicolin

Alessandro Cicolin

Neurology - San Giovanni Battista Hospital - Molinette, Turin

Matteo Gastaldi

Matteo Gastaldi

Neuroimmunology - Mondino Foundation, Pavia

Scopri di più

Neurologo che vive con passione il suo impegno di medico e ricercatore nel campo degli ‘autoanticorpi’ responsabili delle malattie autoimmuni del sistema nervoso. È l’attuale responsabile della sezione di Ricerca e del laboratorio di Neuroimmunologia dell’Istituto Neurologico a carattere scientifico -IRCCS Fondazione Mondino di Pavia. Ha vinto il premio Rita Levi Montalcini 2023 e il Seed Grant 2022 della fondazione AEalliance.org.

Marcello Govoni

Marcello Govoni

Rheumatology - University Hospital, Ferrara

Scopri di più

Professore Ordinario di Reumatologia e Direttore Scuola di Specializzazione in Reumatologia presso l’Università di Ferrara. Direttore UOC Reumatologia Azienda Ospedaliero Universitaria di Ferrara. Coordinatore del Gruppo di Studio sul Lupus Neuropsichiatrico della Società Italiana di Reumatologia.

Carlo Salvarani

Carlo Salvarani

Rheumatology - Local Health Unit, Reggio Emilia

Maria Claudia Vigliani

Maria Claudia Vigliani

Neuroimmunology - San Giovanni Battista Hospital - Molinette, Turin

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Dirigente medico di I Livello presso le I-II Divisione Universitaria di Neurologia della Azienda Sanitaria San Giovanni Battista di Torino si è formata al Salpetriere di Parigi, all’Hirfurshung Institute di Tubinga in Germania e all’ Hopital Civil di Barcellona. Fa parte di gruppi Europei di ricerca e sono autrice di molte pubblicazioni internazionali. Oltre all’attività clinica di reparto, seguo molti ambulatori in particolare concentrati sulle malattie degenerative e immunomediate del sistema nervoso. Organizza ogni anno un corso di aggiornamento nazionale sulle malattie immunomediate e su quelle degenerative del sistema nervoso.
Alberto Vogrig

Alberto Vogrig

Neuroimmunology - Central Friuli University Health Authority, Udine

Scopri di più

Neurologo-Ricercatore presso la Clinica Neurologica dell’Azienda Sanitaria Universitaria Friuli Centrale di Udine. Il Dott. Vogrig ha conseguito la specializzazione in Neurologia presso l’Università degli Studi di Verona con massimo dei voti
e lode (2016) e ha eseguito diversi soggiorni di aggiornamento esteri (Atene, Grecia; Bergen,
Norvegia; Praga, Repubblica Ceca) oltre a due prolungati periodi di ricerca, uno negli Stati
Uniti (Università di Stanford, California) ed uno in Francia (Università di Lione).
L’attività assistenziale e di ricerca del Dott. Vogrig è rivolta in maniera elettiva a due filoni principali:
(1) Neuroimmunologia, con particolare riferimento alle sindromi neurologiche paraneoplastiche, encefaliti autoimmuni e neuro-tossicità da immunoterapia. Tale attività viene eseguita anche grazie all’esperienza clinica e di laboratorio di tre anni acquisita presso il Centro di Riferimento Francese per le Sindromi Neurologiche Paraneoplastiche (Lione) con Dottorato di Ricerca in Neuroscienze intitolato “Triggering factors and immunopathogenesis
of paraneoplastic neurological syndromes” (Direttore di Tesi: Prof. Jerome Honnorat).
(2) Epilettologia, con gestione dell’Ambulatorio Epilessia e dell’attività di diagnostica
neurofisiologica (EEG, Video-EEG). Il suo gruppo di ricerca presso la Clinica Neurologica di Udine è dedicato alla neuroimmunologia, con la finalità di migliorare l’approccio diagnostico-terapeutico delle
patologie neurologiche immuno-mediate, oltre che caratterizzarne nel dettaglio l’epidemiologia e lo spettro clinico.
La produzione scientifica è consultabile presso:
https://pubmed.ncbi.nlm.nih.gov/?term=alberto+vogrig&sort=date

What we are...

Our story begins with a request – ‘I want to be like before‘ – and with the realization by a young man and his entire family that nothing will ever be the same, but that there will only be an ‘after’ to be built. It comes from a mistake and a series of mistakes that become experiences, from trust in relationships, from the belief that embarking on a journey always leads somewhere, and that we grow this way too, by experimenting and through differentiation. And on this journey, we meet people – all kinds of people – but the ones that matter are the wonderful ones, those capable of inspiring and supporting. And that’s how we start living and breathing again, and the horizons finally broaden, finding meaning beyond the pathology and disease forecasts. We are patient brains, but also impatient brains drawing new futures and new presents, really… and for today, that’s enough.

Do you want to share your story?

Write to info@encefalititdisimmuni.it