About Us

History

AMM was founded in 2018 as a movement of patients and allies, becoming a formally constituted association in Lisbon in 2025. Since its inception, it has acted as a leading Portuguese-speaking network promoting science, care, and rights for those living with ME/CFS, Long COVID, and other post-infectious syndromes.

Mission and Scope

According to its Statutes, AMM has a national and international scope, carrying out activities in Portugal, Brazil, and among Portuguese-speaking communities. Its mission is clear: to ensure access to accurate diagnoses, effective treatments, and comprehensive support, promoting research, professional training, and public policies based on scientific evidence and international best practices.

Principles and Values

Free of charge: all support, training, and guidance services and activities are free of charge for patients, families, and healthcare professionals

Universality: no one chooses to have these diseases; AMM's support is available to everyone, members or not.

Ethics and transparency: rigorous management, without conflicts of interest.

Science and evidence: all actions are aligned with current scientific research and quality clinical practices.

Defense of rights: commitment to the dignity, citizenship, and inclusion of patients.

Participate

Aliança Millions Missing é uma associação de doentes EM/SFC/CL

Science and Evidence

AMM is guided by the highest scientific standards. We base our work on the best clinical and research evidence currently available, promoting the dissemination of validated knowledge in international guidelines and globally recognized clinical centers of excellence.

Our commitment is twofold:

Rigor — we only support practices and therapeutic approaches based on robust scientific evidence or systematic evaluation in reference centers.

Responsible openness — we closely monitor promising emerging therapies, sharing information clearly and transparently, always in dialogue with the scientific and clinical community.

Governing Bodies

(Provisional Board 2025–2026)

Joan Serra Hoffman

President

Co-fundadora da Aliança Millions Missing, com mais de 30 anos de experiência integrando investigação, política e prática, promovendo a implementação de soluções fundamentadas em evidências para desafios complexos de saúde e sociais. Atuou como assistente especial nos Centros de Controle e Prevenção de Doenças (CDC) dos EUA, liderando um programa nacional de 10 centros acadêmicos de excelência na prevenção da violência juvenil. Foi Co-diretora fundadora da Coalizão Interamericana para Prevenção da Violência, que promoveu uma abordagem de saúde pública e coordenação entre OMS/OPAS, USAID, Banco Mundial, Banco Interamericano de Desenvolvimento, CDC e UNESCO. Eleita Next Generation Fellow pela Fundação Rockefeller por seu trabalho em hospitais públicos, centros de trauma de nível 1 e departamentos de saúde pública com vítimas de violência. Aposentou-se do Banco Mundial devido à EM/SFC.

André Filipe Cachaço

Vice President

Nascido em 1982 na cidade da Amadora, é licenciado em Filosofia pela Faculdade de Letras da Universidade de Lisboa (2008) e Assistente Técnico na Função Pública desde 2010.

Tem como principais áreas de interesse Epistemologia, Bioética, Ética da Inteligência Artificial, Filosofia da Consciência e da Identidade Pessoal, a análise crítica da política e da economia enquanto fenómenos ideológicos e os direitos laborais. Sofre de EM/SFC desde 2010.

Fernando Guedes

Secretary

Engenheiro Civil com Mestrado Integrado pela Faculdade de Engenharia da Universidade do Porto, possui uma vasta experiência em reabilitação urbana, gestão de programas públicos e projetos cofinanciados europeus. Atualmente, é doutorando em Ciência e Tecnologia Web na UTAD/UAb e presidente do IDEALPT – Instituto para o Desenvolvimento Estrutural de Portugal. Em 2024, obteve diagnóstico formal de Encefalomielite Miálgica com base nos resultados de um Teste Cardiopulmonar de Esforço (CPET) em prova de dois dias, conduzido pelo Prof. Doutor João Carlos Winck. Encontra-se atualmente em situação de baixa médica prolongada, mantendo atividade em regime limitado nas áreas da consultoria estratégica, inovação e transformação digital.

Financial Management and Transparency

The sustainability of AMM is based on principles of rigor and trust. Financial management is ensured by AIDFM – Association for Research and Development of the Faculty of Medicine, a non-profit entity with extensive experience in the administration of scientific and health projects in Portugal. This partnership ensures that membership fees, donations, and sponsorships are managed according to best practices in auditing and accountability, preserving AMM's independence and benefiting from the credibility of recognized professional management.

AMM Network:
Focal Points

In addition to its management, AMM is organized through focal points in strategic areas—a shared leadership model consistent with our identity as a collaborative, patient-led network. Each focal point ensures the connection between management, members, and partners, guaranteeing coordination and transparency.

Currently:

External Relations

Patient Support

Design

Youth

New Members

The network of focal points is constantly growing, reflecting the diversity and dynamism of our community.

Scientific Council

A permanent body composed of nationally and internationally recognized experts (biomedical research, clinical, and public health).

Functions:

Advise management and governing bodies on scientific and technical matters.

Propose and supervise research projects and clinical initiatives.

Issue technical opinions and reports that guide AMM activities.

Collaborate in the organization of conferences, scientific events, and publications.

Ensure alignment with the best available evidence and international quality standards.

With this Council, AMM works closely with the global scientific community, promoting rigor, credibility, and innovation.

Prof. Dr. António Vaz Carneiro, MD, Specialist in Internal Medicine, Nephrology, Faculty of Medicine, University of Lisbon, Portugal.

Dr. Daniel Leal, internist and specialist in functional medicine, based in Portugal.

Prof. Dra. Eleana Lacerda, MD, London School of Hygiene and Tropical Medicine (LSHTM), England.

Prof. Dr. Jaime da Cunha Branco, MD, Rheumatologist, Egas Moniz Hospital, NOVA Medical School (NMS), Faculty of Medical Sciences (FCM) of the New University of Lisbon (UNL), Portugal.

Johanna Squires, MSc, Physiology Specialist, Brigham and Women’s Hospital in Boston, Open Medicine Foundation, Boston, USA.

Prof. Dr. João Carlos Winck, Pulmonologist, Faculty of Medicine, University of Porto; CUF Institute, Porto, Portugal.

Dr. João Malato, MD, Gulbenkian Institute of Science for Molecular Medicine.

Dra. Linda Tannenbaum, bacteriology specialist, Open Medicine Foundation (OMF), mother of a patient with ME/CFS, USA.

Dr. Rudolph Oliveira, MD, Federal University of São Paulo (UNIFESP) in São Paulo, Brazil.

Prof. Dra. Susan Levine, MD, infectious disease specialist, Center for Enervating Neuroimmune Disease at Cornell University, New York, ME/CFS Collaborative Research Center at Cornell University, USA.

Prof. Dr. Luis Nacul, MD, PhD, specialist in General and Family Medicine and Public Health, London School of Hygiene and Tropical Medicine (LSHTM), England.

Prof. Nuno Sepúlveda, specialist in biostatistics, Faculty of Mathematics and Information Science, Warsaw University of Technology, Poland.

Institutional Partnerships and Sponsorships

(Scientific Sponsorships)

AMM collaborates with national and international scientific, academic, and professional entities that reinforce legitimacy, rigor, and impact.

Among the partnerships and sponsorships,
the following stand out:

AIDFM — Association for Research and Development of the Faculty of Medicine (financial and administrative management).

Ordem dos Médicos — (scientific sponsorship of the conference and training initiatives).

Universities and research centers in Portugal and abroad (scientific projects and training).

International organizations and reference networks: Open Medicine Foundation (OMF), Solve M.E., Patient Led Research Collaborative, World ME Alliance.

These partnerships ensure institutional transparency, integration into global knowledge networks, and scientific quality in everything we do.

Volunteering

AMM has a growing network of volunteers who contribute their time, knowledge, and creativity in communication, design, patient support, and event organization.

João Tinoco

Designer

Visiting Assistant Professor at the University of Trás-os-Montes and Alto Douro, with an academic interest in Health Design. In addition, he served as a volunteer graphic designer for the Millions Missing Alliance, creating the visual identity for the first and second International Conferences on Clinical and Scientific Advances in ME/CFS and Long COVID, which was recognized for its strong communication and visual impact.

Joana Santos Miller

Youth Focal Point

Joana Santos is an advocate living with EM/SFC and hypermobile Ehlers-Danlos syndrome (hEDS) since a young age. For the past six years, she has volunteered as a listener, offering peer support to people navigating chronic illness. She now contributes to Associação Aliança Millions Missing as Youth Focal Point, helping to ensure that the perspectives and experiences of younger people living with EM/SFC, Long COvid and other PAIS are represented in the association’s work.