Team
Álvaro Mendes
Principal Investigator
i3S, University of Porto
Álvaro is an assistant researcher at UnIGENe, IBMC – i3S. His research focuses on the psychosocial aspects of genetic conditions, in particular, the communication of genetic risk information within families and how it stems from genetic counselling. He received a PhD in Health Sciences and Technology (University of Aveiro) and a Degree in Clinical Psychology (University of Coimbra). He is a chartered clinical and health psychologist and psychotherapist by the Portuguese Psychologists’ Association, and a certified systemic family and couples therapist by the Portuguese Society of Family Therapy. He works clinically with people and families living with late-onset neurological diseases at CGPP-IBMC, i3S. He is on the Policy and Ethics Committee of the European Society of Human Genetics, and integrates the Genetic Counselling & Testing working group of the European Huntington Disease Network.
Liliana Sousa
Team Member
University of Aveiro
Liliana is an Associate Professor at the Department of Education and Psychology of the University of Aveiro (UA). She is a clinical psychologist and family therapist, with a PhD in Education Sciences obtained at UA. Currently, she is an integrated member at CINTESIS@RISE. She is the director of the Master in Applied Gerontology at UA since 2017. During the last 20 years, she has maintained research interests in the field of chronic disease, namely related to families living with hereditary conditions (mostly late onset neurodegenerative conditions).
Maria Barbosa
Team Member
i3S, University of Porto
Maria completed her MSc in Clinical and Health Psychology at the University of Porto (UP), in 2022. Her research interests revolve around health psychology, genetic counselling, and the psychosocial aspects of hereditary conditions. Her dissertation focused on the development of a narrative support intervention for persons with hereditary ataxia and the assessment of its impact. During this time, she also undertook her academic internship in genetic counselling at CGPP-IBMC, i3S. Currently, Maria is pursuing a PhD in Clinical Psychology at UP and is working as a research fellow at i3S as part of the DECIDE project.
Milena Paneque
Co-Principal Investigator
i3S, University of Porto
Milena graduated in Psychology in Cuba, where she also completed a Master’s Degree in Genetic Counselling. In 2008, she finished her PhD degree in Biomedical Sciences, at ICBAS (Univ. Porto), in the psychosocial aspects of presymptomatic testing for late-onset neurodegenerative diseases. Milena is genetic counsellor at CGPP-IBMC, i3S. She co-directs the Master course on Genetic Counselling at ICBAS, the first in the country and one of the few accredited by the European Board of Medical Genetics of the European Society of Human Genetics. She was the first professional in Genetic Counselling in Portugal and has been actively involved in the development of the profession and leading research in the field. Her research has been focused on the psychosocial aspects of genetic disease and the quality of genetic counselling.
Jorge Sequeiros
Team Member
i3S, University of Porto
Jorge is a clinical geneticist, Invited Full Professor at ICBAS and Emeritus Professor of the University of Porto (UP) and. He was founder and is Director of the MSc on Genetic Counselling, at ICBAS, and founder and Director of CGPP-IBMC, i3S, where he is still a researcher and member of its Board. He has held numerous positions, including member of the National Council of Bioethics, President of the Ethics Commission of UP, President of the National Medical Genetics Commission, Board Member of the European Society of Human Genetics (ESHG), and its Public and Professional Policy Committee, and the European Board of Medical Genetics. He was a founder and the first-President and of the College of Medical Genetics (Portuguese Medical Association), and founder and member of the Board of the Portuguese Human Genetics Society. He is an honorary member and/or a scientific committee member of several patient associations.
Angus Clarke
Consultant
Cardiff University, UK
Angus is Professor Emeritus and Honorary Consultant in Clinical Genetics in Cardiff University, working there since 1989. He has particular interests in the genetic counselling process and developed the Cardiff MSc course in Genetic Counselling in 2000. He engages in research and policy relating to the social and ethical issues around medical genetics. Currently, he is researching how patients make important decisions related to genetic testing. He contributes to the drafting of policies and reports for the British Society for Genetic Medicine and the European Society of Human Genetics; he is also working on justice in the implementation of genomics. Angus has actively supported patient organisations for many years, including the Ectodermal Dysplasia Society UK and Rett UK.
Filipa Júlio
Team Member
European Huntington Association | Associação Portuguesa dos Doentes de Huntington | University of Coimbra
Filipa graduated in Clinical and Health Psychology at the University of Minho and finished her PhD in Neuropsychology at the University of Coimbra. She has been actively involved with the Huntington’s global community. She is a Clinical and Health Psychology and Neuropsychology Expert of the Portuguese Psychologists’ Association. She serves as Vice-President of the Portuguese Huntington Association, and is a regular member of the European Huntington’s Disease Network. She is a member of the Huntington Study Group and is a Board member (Secretary) of the European Huntington Association (EHA). In October 2020, she started to work as Project Manager for the EHA.
Sofia Fontoura Dias
Team Member
University of Aveiro
Sofia graduated with an MSc in Health Psychology and Neuropsychological Rehabilitation from the University of Aveiro (UA) in 2021. Currently, she is a PhD student in Psychology at UA and a research fellow within the DECIDE project. She also integrates the CINTESIS@RISE research unit. Sofia is a certified psychologist by the Portuguese Psychologists’ Association, with experience in neuropsychological rehabilitation, clinical psychology, and health psychology. Her primary research interests include clinical and health psychology, genetic counselling, and neuropsychology.
Alison Metcalfe
Consultant
LOHA
Alison is an academic researcher and clinician working with families as a registered nurse and systemic family therapist for 30+ years. Alison has specialized in developing interventions to facilitate family communication. Alison was a research Dean at King’s College London and Pro-vice Chancellor at Sheffield Hallam University. Alison is one of the founding directors of LOHA Health Ltd with the mission to support parents in helping their children manage their emotional and mental health to improve families’ wellbeing. LOHA brings together highly experienced psychotherapists, psychiatrists, digital engineers, and designers who work with young people and their families to design hybrid digital and human interventions to improve mental health and emotion regulation.