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I am an assistant researcher at i3S - Instituto de Investigação e Inovação em Saúde of the University of Porto. My research focuses on using interdisciplinary approaches to study genetic counselling and processes of family communication about genetic risks, the roles of healthcare providers in this context, and attitudes and preferences towards family communication practices and policies. I am also interested in broad psychosocial aspects of genetics, such as stigmatisation in relation to inherited genetic disease, and ways to support individuals and families impacted by these conditions. I am the principal investigator of a Portuguese Foundation for Science and Technology (FCT)-funded grant on how best to facilitate disclosure of risk information to patients¿' relatives in genetic counselling (2023-2026). Previously, I was awarded with an FCT contract under the Stimulus for Scientific Employment¿ call (1st edition). I contribute as country lead to the Wellcome Trust-funded project about global public attitudes on genomic information sharing ("Your DNA, Your Say"), and I also integrate the European Joint Programme on Rare Diseases-funded project "SAPIENCE - Social and Psychological Long-Term Consequences of NMDA Encephalitis". I completed a PhD in Health Sciences and Technology from the University of Aveiro and a Licentiate Degree in Clinical Psychology from the University of Coimbra. I am a chartered specialist in Clinical and Health Psychology and an advanced specialist in Psychotherapy, by the Portuguese Psychologists' Association; and a certified Systemic Family and Couples Therapist by the Portuguese Society of Family Therapy. As a clinical psychologist, I integrate the multidisciplinary team of the pre-symptomatic testing protocol for late-onset neurological diseases at the Centre for Predictive and Preventive Genetics (CGPP-IBMC),the outpatient genetics clinical at i3S. In parallel, I am an active member of the Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), for which I have co-authored a number of policy documents. I am also on the Genetic Counselling & Testing working group of the European Huntington Disease Network. I serve the i3S Committee for Ethical and Responsible Conduct of Research, and the Advisory Board of the Journal of Community Genetics. I am a long-term collaborator of lay patient organizations and regularly deliver teaching modules at Master and PhD programs in Health and Clinical Psychology and Genetic Counselling. I have concluded the co-supervision of 1 PhD thesis (FCT-funded) and 4 MSc dissertations; and I am currently co-supervising 3 PhD thesis (all FCT-funded) and 3 MSc dissertations on topics related to psychosocial aspects of genetics. My work reached an H-index of 15, with over 40 articles published in high-quality scientific journals, including the European Journal of Human Genetics, Journal of Genetic Counseling, Social Science & Medicine, and Family Process. Main key-words in his Ciência Vitae CV are Family; Psychology; Communication; Decision-making; Genetic testing; Qualitative research; Genetic counselling.
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Identification

Personal identification

Full name
Álvaro Mendes
Gender
Male

Citation names

  • Mendes, Álvaro

Author identifiers

Ciência ID
071F-14C3-C6FD
ORCID iD
0000-0002-8766-7646
Researcher Id
K-4394-2013
Scopus Author Id
36508979800

Email addresses

  • alvaro.mendes@ibmc.up.pt (Professional)

Telephones

Telephone
  • 226074912 Ext.: 6181 (Professional)

Addresses

  • i3S, Instituto de Investigação e inovação em Saúde; IBMC, Instituto de Biologia Molecular e Celular - UnIGENe; Universidade do Porto . Rua Alfredo Allen, 208, 4200-135 P, Porto, Porto, Portugal (Professional)

Websites

Knowledge fields

  • Social Sciences - Psychology
  • Social Sciences - Other Social Sciences - Social Sciences, Interdisciplinary
  • Medical and Health Sciences - Health Sciences - Social Biomedical Sciences

Languages

Language Speaking Reading Writing Listening Peer-review
Portuguese (Mother tongue)
English Advanced (C1) Proficiency (C2) Advanced (C1) Proficiency (C2) Proficiency (C2)
Education
Degree Classification
2004 - 2016
Concluded
 Chartered Systemic Family and Couples Therapist (Título de especialista)
Sociedade Portuguesa de Terapia Familiar, Portugal
2016
Concluded
 Specialist in Clinical and Health Psychology (Título de especialista)
Ordem dos Psicólogos Portugueses, Portugal
2016
Concluded
 Advanced specialty in Psychotherapy (Título de especialista)
Ordem dos Psicólogos Portugueses, Portugal
2007/10/01 - 2012/04/17
Concluded
 Health Sciences and Technology (Doutoramento)
Universidade de Aveiro, Portugal
"Family and genetic counselling: the case of hereditary cancers" (THESIS/DISSERTATION)
 Approved by unanimity
1997/09/15 - 2002/07/22
Concluded
 Clinical Psychology (Licenciatura)
Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
 15
1992 - 1997
Concluded
 High School (Ensino secundário)
Escola Secundária Artur Gonçalves, Portugal
 16
Affiliation

Science

Category
Host institution 		Employer
2019/03/01 - Current Auxiliary Researcher (Research) Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2013/08/01 - 2019/02/28 Postdoc (Research) Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
2018/02 - 2018/02 Visiting Researcher (Research) King's College London Florence Nightingale School of Nursing and Midwifery, United Kingdom
2016/06 - 2016/07 Visiting Researcher (Research) Cardiff University Institute of Medical Genetics, United Kingdom
2015/11 - 2015/12 Visiting Researcher (Research) Uppsala Universitet Biomedicinsk stralningsvetenskap, Sweden
2012/09/30 - 2013/06/30 Research Assistant (Research) Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
2003/09/01 - 2005/08/30 Research Assistant (Research) Universidade de Aveiro, Portugal
Universidade de Aveiro, Portugal
2002/09 - 2003/07 Research Assistant (Research) Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal

Teaching in Higher Education

Category
Host institution 		Employer
2014/09 - 2016/07 Invited Associate Professor (University Teacher) Universidade de Aveiro, Portugal
Universidade de Aveiro, Portugal
2005/09/01 - 2007/09/30 Lecturer (University Teacher) Instituto Superior Miguel Torga, Portugal

Positions / Appointments

Category
Host institution 		Employer
2016/03/01 - Current Technical supervisor of the clinical psychology team Centro de Genética Preditiva e Preventiva, Portugal
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Others

Category
Host institution 		Employer
2007/11/01 - 2011/10/31 PhD Candidate Universidade de Aveiro, Portugal
Universidade de Aveiro, Portugal
2001/09 - 2002/07 Intern in Clinical Psychology - Family and couples therapy Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
Projects

Grant

Designation Funders
2023/03/15 - Current DECIDE - Deliberating genetic risks: decision-making and disclosure from genetic counselling to the family
2022.04025.PTDC
Principal investigator
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Universidade de Aveiro, Portugal
Fundação para a Ciência e a Tecnologia
Ongoing
2022/06/15 - Current SAPIENCE - Social and Psychological Long-Term Consequences of NMDA Receptor Encephalitis
EJPRD21-040
Researcher
Charité - Universitätsmedizin Berlin Institut für Medizin- Pflegepädagogik und Pflegewissenschaft, Germany
 ERA-Net Cofund scheme
Ongoing
2018/06/01 - Current Maximising impact of research in neurodevelopment disorders (MINDDS)
CA16210
Researcher
European Commission
Ongoing
2017/06/01 - Current Your DNA, Your Say: public attitudes on the sharing of genomic information
206194/Z/17/Z
National contact point
Wellcome Genome Campus, United Kingdom
 Wellcome Trust
Concluded
2013/08/01 - 2019/02/28 Communication of information about genetic risk within the family: using evidence to develop family-centred services in genetic counselling
SFRH/BPD/88647/2012
Principal investigator
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
 Fundação para a Ciência e a Tecnologia
Concluded
2012/09/01 - 2013/06 Assessment of the public knowledge about health and medical information in Portugal
HMSP/IISE/SAU-ICT/0003/2009
Research Fellow
Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
 Harvard Medical School
Concluded
2010/01 - 2011/01 Apoio psicoeducativo a cuidadores familiares de idosos com demência
100131/FCG/2009
Other
Universidade de Aveiro, Portugal
 Fundação Calouste Gulbenkian
Concluded
2003/09 - 2005/08 ProFamílias: Apoio das unidades de saúde a doentes crónicos e suas famílias
57069/2002
Research Fellow
Universidade de Aveiro, Portugal
 Fundação Calouste Gulbenkian
Concluded

Contract

Designation Funders
2019/03/01 - Current Deliberating information-sharing in genetic counselling: professional and patient decision making in a complex healthcare environment
CEECIND/02615/2017
Principal investigator
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
 Fundação para a Ciência e a Tecnologia
Ongoing

Other

Designation Funders
2021/01/01 - Current Instituto de Investigação e Inovação em Saúde
(UID/BIM/04293/2020
Other
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
 Fundação para a Ciência e a Tecnologia
Ongoing
2015/02 - 2020/12/31 Instituto de Investigação e Inovação em Saúde
UID/BIM/04293/2013
Researcher
Fundação para a Ciência e a Tecnologia
Ongoing
2015/09 - 2018/03 Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives (CHIP ME)
COST Action IS1303
Researcher
EU Framework Programme for Research and Innovation Excellent Science
Concluded
Outputs

Publications

Book
  1. Liliana Sousa; Ana Paula Relvas; Mendes, Álvaro. Enfrentar a velhice e a doença crónica: Apoio das unidades de saúde a doentes crónicos e suas famílias. Lisboa, Portugal: CLIMEPSI Editores. 2007.
    Published
Book chapter
  1. Álvaro Mendes. "Cidadania, responsabilidade e ética relacional: Testes genéticos e a comunicação de informação sobre riscos de doenças genéticas na família". In Cidadania e genética, edited by Helena Machado, 131-150. Porto, Portugal: Edições Afrontamento, 2017.
    Published
Conference poster
  1. Maria Barbosa; Mariana Polarpo; Paneque, Milena; Marina Lemos; Mendes, Álvaro. "Psychological impacts of an online genetic counselling narrative group intervention in people with hereditary ataxia". Paper presented in 36th Conference of the European Health Psychology Society, 2022.
  2. Paneque, Milena; Mariana Policarpo; Maria Barbosa; Marina Lemos; Mendes, Álvaro. "An online genetic counselling narrative group as a tool for supporting patients with hereditary ataxias in Portugal". 2022.
  3. Mendes, Álvaro. "Exploring responsibility about reproduction in the accounts of individuals at risk for and affected by late-onset neurological diseases: a qualitative study". Paper presented in ESHG Conference, 2020.
  4. Álvaro Mendes; Jorge Sequeiros; Angus Clarke. "Exploring responsibility about reproduction in the accounts of individuals at risk for and affected by late onset neurological diseases: a qualitative study". Paper presented in 23ª Reunião Anual da Sociedade Portuguesa de Genética Humana, 2019.
    10.1183/1393003.congress-2017.oa315
  5. Márcia Carvalho; José Pereira; Catarina Costa; Mendes, Álvaro; Marina Lemos; Milena Paneque. "O estágio no contexto do aconselhamento genético como experiência de formação em Ética e Deontologia.". Paper presented in Seminário Luso-Brasileiro de Ética em Psicologia e Educação., 2019.
  6. Mendes, Álvaro. "Transgenerational management of information about Huntington disease within the family: from past silence to normalization in the present". Paper presented in ESHG Conference, 2019.
  7. José Pereira; Catarina Costa; Milena Paneque; Jorge Sequeiros; Mendes, Álvaro. "Young adults' experiences with risk and with pre-symptomatic testing for late-onset neurological disorders: findings from a Portuguese qualitative study". Paper presented in ESHG Conference, 2017.
  8. Mendes, Álvaro; Alison Metcalfe; Milena Paneque; Liliana Sousa; Angus Clarke; Jorge Sequeiros. "Communicating information about genetic risks within the family: putting the family at the heart of it.". Paper presented in ESHG Conference, 2017.
  9. Sara Guerra; Mendes, Álvaro; Liliana Sousa. "Affective meanings of inheriting and “donating” a late-onset neurological genetic illness: an exploratory qualitative study.". Paper presented in UA Research Day 2017, 2017.
  10. Mendes, Álvaro; Christine Farnos; Linda Battistuzzi; Pascal Borry; Hermann Nys; Mark Rothstein; Emmanuelle Rial-Sebbag. "Disclosing genetic information to family members: a comparative law study of the legal regimes applicable to patients’ and health professionals’ liability.". Paper presented in ESHG Conference, 2016.
  11. Álvaro Mendes; Liliana Sousa. "Challenges for cancer genetic counselling: findings from Portuguese oncogenetic services". Paper presented in ESHG Conference, 2012.
  12. Henrique Vicente; Marta Patrão; Mendes, Álvaro; Sara Guerra; Liliana Sousa. "The multigenarational family: Towards a new understanding of family dynamics". Paper presented in XVII IFTA World Family Therapy Congress, 2009.
  13. Mendes, Álvaro; Liliana Sousa. "The genetic counselling experience: a case-study of an hereditary cancers’ consultation". Paper presented in XXIX International Congress of Psychology, 2008.
  14. Liliana Sousa; Mendes, Álvaro; Ana Paula Relvas. "Psycho-educational intervention in multi-families discussion groups: the case of stroke patients". Paper presented in XV IFTA World Family Therapy Congress, 2006.
Journal article
  1. Álvaro Mendes; Milena Paneque; Jorge Sequeiros. "Disclosure of genetic risk to family members: A qualitative study on healthcare professionals' perceived roles and responsibilities". European Journal of Medical Genetics (2024): https://doi.org/10.1016/j.ejmg.2024.104931.
    10.1016/j.ejmg.2024.104931
  2. Carla Roma Oliveira; Liliana Sousa; Pedro Sa-Couto; Jorge Sequeiros; Álvaro Mendes. "Living with Transthyretin-Related Familial Amyloid Polyneuropathy—TTR-FAP: Generativity, Satisfaction with Life and Health Perception in Older Affected Individuals". Journal of Adult Development (2023): https://doi.org/10.1007/s10804-023-09459-2.
    10.1007/s10804-023-09459-2
  3. Francesca Forzano; Olga Antonova; Angus J. Clarke; Mendes, Álvaro; et al.. "Reply to Letter by Tellier et al., ‘Scientific refutation of ESHG statement on embryo selection'". European Journal of Human Genetics 31 (2023): 279-281.
    Published
  4. Sara Guerra; Carla Oliveira; Catarina Seidi; Liliana Sousa; Álvaro Mendes. "Multifamily interventions in the context of inherited genetic conditions: A scoping review". Journal of Family Therapy (2023): https://doi.org/10.1111/1467-6427.12424.
    10.1111/1467-6427.12424
  5. Daniela Couto; Liliana Sousa; Sequeiros, Jorge; Manuela Lima; Mendes, Álvaro. "Restrictions in care following the COVID-19 pandemic severely impacted Machado-Joseph disease patients: a study in the Azores Islands, Portugal". Journal of Community Genetics 13 4 (2022): 459-461.
    Published
  6. Carla Roma Oliveira; Mendes, Álvaro; Sequeiros, Jorge; Liliana Sousa. "From older to younger generations: Intergenerational transmission of health-related roles in families with Huntington's disease". Journal of Aging Studies 61 (2022):
    Published
  7. Seidi, Catarina; Patrão, Marta; Guerra, Sara; Oliveira, Carla Roma; Mendes, Álvaro; Sousa, Liliana. "The experience of receiving and transmitting a genetic disease". Journal of Constructivist Psychology (2022): 1-16. http://dx.doi.org/10.1080/10720537.2022.2037113.
    Published • 10.1080/10720537.2022.2037113
  8. Milne, R.; Morley, K.I.; Almarri, M.A.; Atutornu, J.; Baranova, E.E.; Bevan, P.; Cerezo, M.; et al. "Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries". Genetics in Medicine (2022): http://www.scopus.com/inward/record.url?eid=2-s2.0-85124015446&partnerID=MN8TOARS.
    10.1016/j.gim.2022.01.002
  9. Carla Roma Oliveira; Álvaro Mendes; Liliana Sousa. "Impacto dos papéis dos mais velhos na promoção da saúde em famílias com paramiloidose". PSICOLOGIA (2021): https://doi.org/10.17575/psicologia.v35i2.1732.
    10.17575/psicologia.v35i2.1732
  10. Álvaro Mendes; Jorge Sequeiros; Angus J. Clarke. "Between responsibility and desire: Accounts of reproductive decisions from those at risk for or affected by late-onset neurological diseases". Journal of Genetic Counseling (2021): https://doi.org/10.1002/jgc4.1415.
    10.1002/jgc4.1415
  11. Carla Roma Oliveira; Álvaro Mendes; Jorge Sequeiros; Liliana Sousa. "Role of older generations in the family's adjustment to Huntington disease". Journal of Community Genetics (2021): https://doi.org/10.1007/s12687-021-00523-6.
    10.1007/s12687-021-00523-6
  12. Milne, R.; Morley, K.I.; Almarri, M.A.; Anwer, S.; Atutornu, J.; Baranova, E.E.; Bevan, P.; et al. "Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries". Genome Medicine 13 1 (2021): http://www.scopus.com/inward/record.url?eid=2-s2.0-85106873537&partnerID=MN8TOARS.
    10.1186/s13073-021-00903-0
  13. Forzano, F.; Antonova, O.; Clarke, A.; de Wert, G.; Hentze, S.; Jamshidi, Y.; Moreau, Y.; et al. "The use of polygenic risk scores in pre-implantation genetic testing: an unproven, unethical practice". European Journal of Human Genetics (2021): http://www.scopus.com/inward/record.url?eid=2-s2.0-85121535929&partnerID=MN8TOARS.
    10.1038/s41431-021-01000-x
  14. Guido de Wert; Wibo Dondorp; Angus Clarke; Elisabeth Dequecker; Christophe Cordier; Zandra Deans. "Opportunistic genomic screening. Recommendations of the European Society of Human Genetics.". European journal of human genetics : EJHG (2020): https://doi.org/10.1038/s41431-020-00758-w.
    10.1038/s41431-020-00758-w
  15. Anna Middleton; Richard Milne; Mohamed Almarri; Shamim Anwer; Jerome Atutornu; Elena Baranova. "Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?". American journal of human genetics (2020): https://doi.org/10.1016/j.ajhg.2020.08.023.
    10.1016/j.ajhg.2020.08.023
  16. Vigdis Stefansdottir; Eirny Thorolfsdottir; Hakon B. Hognason; Christine Patch; Carla van El; Sabine Hentze; Christophe Cordier; Álvaro Mendes; Jon J. Jonsson. "Web-based return of BRCA2 research results: one-year genetic counselling experience in Iceland". European Journal of Human Genetics (2020): https://doi.org/10.1038/s41431-020-0665-1.
    10.1038/s41431-020-0665-1
  17. Carla Roma Oliveira; Álvaro Mendes; Jorge Sequeiros; Liliana Sousa. "Management of information within Portuguese families with Huntington disease: a transgenerational process for putting the puzzle together". European Journal of Human Genetics (2020): https://doi.org/10.1038/s41431-020-0630-z.
    10.1038/s41431-020-0630-z
  18. Fellmann, F.; Rial-Sebbag, E.; Patch, C.; Hentze, S.; Stefandottir, V.; Mendes, Á.; van El, C.G.; Cornel, M.C.; Forzano, F.. "ESHG PPPC Comments on postmortem use of genetic data for research purposes". European Journal of Human Genetics 28 2 (2020): 144-146. http://www.scopus.com/inward/record.url?eid=2-s2.0-85074573318&partnerID=MN8TOARS.
    10.1038/s41431-019-0525-z
  19. Abreu, L.; Borlido-Santos, J.; Mendes, Á.; Vilar-Correia, M.R.. "Patients' perceptions of family engagement in health information practices: influences on the self-management of asthma". Journal of Communication in Healthcare 13 1 (2020): 17-26. http://www.scopus.com/inward/record.url?eid=2-s2.0-85082948452&partnerID=MN8TOARS.
    10.1080/17538068.2020.1742490
  20. Alvaro Mendes; Carmen Elisa Travieso; Liliana Sousa. "A diabetes não dói, não se sente, mas está cá dentro!". Psychologica (2019): https://doi.org/10.14195/1647-8606_62-2_1.
    10.14195/1647-8606_62-2_1
  21. Álvaro Mendes; Milena Paneque; Angus Clarke; Jorge Sequeiros. "Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease". European Journal of Human Genetics 27 3 (2019): 353-359. https://doi.org/10.1038/s41431-018-0308-y.
    10.1038/s41431-018-0308-y
  22. Paneque, M.; Félix, J.; Mendes, Á.; Lemos, C.; Ledo, S.; Silva, J.; Sequeiros, J.. "Twenty years of a pre-symptomatic testing protocol for late-onset neurological diseases in Portugal,Vinte anos de um protocolo de teste pré-sintomático para doenças neurológicas de início tardio em Portugal". Acta Medica Portuguesa 32 4 (2019): 295-304. http://www.scopus.com/inward/record.url?eid=2-s2.0-85065766376&partnerID=MN8TOARS.
    10.20344/amp.10526
  23. Fellmann, F.; van El, C.G.; Charron, P.; Michaud, K.; Howard, H.C.; Boers, S.N.; Clarke, A.J.; et al. "European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death". European Journal of Human Genetics 27 12 (2019): 1763-1773. http://www.scopus.com/inward/record.url?eid=2-s2.0-85068224581&partnerID=MN8TOARS.
    10.1038/s41431-019-0445-y
  24. Carrieri, D.; Howard, H.C.; Benjamin, C.; Clarke, A.J.; Dheensa, S.; Doheny, S.; Hawkins, N.; et al. "Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics". European Journal of Human Genetics 27 2 (2019): 169-182. http://www.scopus.com/inward/record.url?eid=2-s2.0-85052918994&partnerID=MN8TOARS.
    10.1038/s41431-018-0285-1
  25. Mendes Á; Metcalfe A; Paneque M; Sousa L; Clarke AJ; Sequeiros J. "Communication of Information about Genetic Risks: Putting Families at the Center.". Family process (2018): http://europepmc.org/abstract/med/28714147.
    10.1111/famp.12306
  26. Borry, P.; Bentzen, H.B.; Budin-Ljøsne, I.; Cornel, M.C.; Howard, H.C.; Feeney, O.; Jackson, L.; et al. "The challenges of the expanded availability of genomic information: an agenda-setting paper". Journal of Community Genetics 9 2 (2018): 103-116. http://www.scopus.com/inward/record.url?eid=2-s2.0-85029899417&partnerID=MN8TOARS.
    10.1007/s12687-017-0331-7
  27. Sirchia, F.; Carrieri, D.; Dheensa, S.; Benjamin, C.; Kayserili, H.; Cordier, C.; Van El, C.G.; et al. "Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe". European Journal of Human Genetics 26 7 (2018): 946-954. http://www.scopus.com/inward/record.url?eid=2-s2.0-85045735362&partnerID=MN8TOARS.
    10.1038/s41431-018-0131-5
  28. Middleton, A.; Mendes, Á.; Benjamin, C.M.; Howard, H.C.. "Direct-to-consumer genetic testing: Where and how does genetic counseling fit?". Personalized Medicine 14 3 (2017): 249-257. http://www.scopus.com/inward/record.url?eid=2-s2.0-85019375019&partnerID=MN8TOARS.
    10.2217/pme-2017-0001
  29. Oliveira, C.R.; Mendes, Á.; Sousa, L.. "Health promotion in families with paramyloidosis: the role of elders with younger family members,Promoção da saúde em famílias com paramiloidose: papéis dos mais velhos junto dos mais novos". Cadernos de saude publica 33 5 (2017): e00185515-e00185515. http://www.scopus.com/inward/record.url?eid=2-s2.0-85021859333&partnerID=MN8TOARS.
    10.1590/0102-311X00185515
  30. Mendes, Á.; Abreu, L.; Vilar-Correia, M.R.; Borlido-Santos, J.. "“That Should Be Left to Doctors, That’s What They are There For!”—Exploring the Reflexivity and Trust of Young Adults When Seeking Health Information". Health Communication 32 9 (2017): 1076-1081. http://www.scopus.com/inward/record.url?eid=2-s2.0-84980395589&partnerID=MN8TOARS.
    10.1080/10410236.2016.1199081
  31. Mendes, Á.; Sousa, L.; Sequeiros, J.; Clarke, A.. "Discredited legacy: Stigma and familial amyloid polyneuropathy in Northwestern Portugal". Social Science and Medicine 182 (2017): 73-80. http://www.scopus.com/inward/record.url?eid=2-s2.0-85018469092&partnerID=MN8TOARS.
    10.1016/j.socscimed.2017.04.026
  32. Oliveira, C.R.; Mendes, A.; Sousa, L.. "From older to younger: Intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy". European Journal of Human Genetics 25 6 (2017): 687-693. http://www.scopus.com/inward/record.url?eid=2-s2.0-85015963737&partnerID=MN8TOARS.
    10.1038/ejhg.2017.40
  33. Mendes, Á.; Paneque, M.; Sousa, L.; Clarke, A.; Sequeiros, J.. "How communication of genetic information within the family is addressed in genetic counselling: A systematic review of research evidence". European Journal of Human Genetics 24 3 (2016): 315-325. http://www.scopus.com/inward/record.url?eid=2-s2.0-84958109101&partnerID=MN8TOARS.
    10.1038/ejhg.2015.174
  34. Sousa, L.; Patrão, M.; Mendes, Á.. "Material inheritances: An affective story in the history of elderly persons". International Journal of Ageing and Later Life 9 2 (2015): 35-52. http://www.scopus.com/inward/record.url?eid=2-s2.0-84948138912&partnerID=MN8TOARS.
    10.3384/ijal.1652-8670.15266
  35. Paneque, M.; Mendes, Á.; Saraiva, J.; Sequeiros, J.. "Genetic Counseling in Portugal: Education, Practice and a Developing Profession". Journal of Genetic Counseling 24 4 (2015): 548-552. http://www.scopus.com/inward/record.url?eid=2-s2.0-84938200744&partnerID=MN8TOARS.
    10.1007/s10897-015-9827-7
  36. Paneque, M.; Mendes, Á.; Guimarães, L.; Sequeiros, J.; Skirton, H.. "Genetics Health Professionals’ Views on Quality of Genetic Counseling Service Provision for Presymptomatic Testing in Late-Onset Neurological Diseases in Portugal: Core Components, Specific Challenges and the Need for Assessment Tools". Journal of Genetic Counseling 24 4 (2015): 616-625. http://www.scopus.com/inward/record.url?eid=2-s2.0-84938211827&partnerID=MN8TOARS.
    10.1007/s10897-014-9784-6
  37. Mendes, A.; Chiquelho, R.; Santos, T.A.; Sousa, L.. "Supporting families in genetic counselling services: A psychoeducational multifamily discussion group for at-risk colorectal cancer families". Journal of Family Therapy 37 3 (2015): 343-360. http://www.scopus.com/inward/record.url?eid=2-s2.0-84932195385&partnerID=MN8TOARS.
    10.1111/1467-6427.12016
  38. Mendes, Álvaro. "The resilience of migrant health: plural and transnational therapeutic itineraries.". Revista Interdisciplinar da Mobilidade Humana, 21(40): 69-92. (2013):
    http://dx.doi.org/10.1590/S1980-85852013000100005
  39. Mendes, A.; Sousa, L.; Paneque, M.. "From constraints to opportunities? Provision of psychosocial support in Portuguese oncogenetic counseling services". Journal of Genetic Counseling 22 6 (2013): 771-783. http://www.scopus.com/inward/record.url?eid=2-s2.0-84888135697&partnerID=MN8TOARS.
    10.1007/s10897-013-9612-4
  40. Guerra, S.R.; Mendes, Á.F.; Figueiredo, D.M.; Sousa, L.X.. "ProFamilies-dementia: A programme for elderly people with dementia and their families". Dementia 11 5 (2012): 589-596. http://www.scopus.com/inward/record.url?eid=2-s2.0-84866410004&partnerID=MN8TOARS.
    10.1177/1471301211421061
  41. Mendes, A.; Sousa, L.. "Families' experience of oncogenetic counselling: Accounts from a heterogeneous hereditary cancer risk population". Familial Cancer 11 2 (2012): 291-306. http://www.scopus.com/inward/record.url?eid=2-s2.0-84864713845&partnerID=MN8TOARS.
    10.1007/s10689-012-9514-x
  42. Mendes, A.; Paneque, M.; Sousa, L.. "Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals' views on a multifamily intervention for cancer susceptibility families". Journal of Community Genetics 3 4 (2012): 311-318. http://www.scopus.com/inward/record.url?eid=2-s2.0-84869122227&partnerID=MN8TOARS.
    10.1007/s12687-012-0079-z
  43. Mendes, Álvaro. "Doenças hereditárias, aconselhamento genético e redes sociais e familiares: da ética intergeracional ao papel dos mais velhos". 15 1 (2012): 199-216.
    Published
  44. Chiquelho, R.; Neves, S.; Mendes, A.; Relvas, A.P.; Sousa, L.. "proFamilies: A psycho-educational multi-family group intervention for cancer patients and their families". European Journal of Cancer Care 20 3 (2011): 337-344. http://www.scopus.com/inward/record.url?eid=2-s2.0-79952362081&partnerID=MN8TOARS.
    10.1111/j.1365-2354.2009.01154.x
  45. Mendes, A.F.; Santos, T.A.; Sousa, L.. "Experiencing genetic counselling for hereditary cancers: The client's perspective". European Journal of Cancer Care 20 2 (2011): 204-211. http://www.scopus.com/inward/record.url?eid=2-s2.0-79551469166&partnerID=MN8TOARS.
    10.1111/j.1365-2354.2010.01201.x
  46. Mendes, Á.; Chiquelho, R.; Santos, T.A.; Sousa, L.. "Family matters: Examining a multi-family group intervention for women with BRCA mutations in the scope of genetic counselling". Journal of Community Genetics 1 4 (2010): 161-168. http://www.scopus.com/inward/record.url?eid=2-s2.0-79952363526&partnerID=MN8TOARS.
    10.1007/s12687-010-0022-0
  47. Mendes, Álvaro. "ProDoentes: Programa de apoio psico-educativo a doentes oncológicos". 41 (2006): 231-247.
    Published
Activities

Oral presentation

Presentation title Event name
Host (Event location)
2023/06/21 Preferences of people with inherited genetic conditions and family members in Portugal toward informing at-risk relatives of genetic risk European Society of Human Genetics Conference
European Society of Human Genetics (Glasgow, United Kingdom)
2022/09/08 Significado afetivo associado à experiência de herdar e transmitir uma doença genética 14º Congresso Nacional de Psicologia da Saúde
Universidade da Madeira
2022/05/05 Narrating ataxia: adapting the expressive writing paradigm for ataxia patients in the context of a genetic counselling narrative group intervention 15º Encontro de Investigação Jovem da Universidade do Porto
Universidade do Porto
2021/11/18 Disclosure of genetic information to patients' relatives: healthcare professionals' perspective on perceived responsibilities and confidentiality of genetic information
Portuguese Society of Human Genetics (Virtual meeting, Portugal)
2021/10/28 Development of an online narrative group intervention to improve psychosocial support for people with hereditary ataxias III World Congress on Genetic Counseliing
Wellcome Trust Sanger Institute (Virtual meeting, United Kingdom)
2021/10/27 Affective meanings about inheriting and transmitting transthyretin-related familial amyloid polyneuropathy III World Congress on Genetic Counselling
Wellcome Trust Sanger Institute (Virtual meeting, United Kingdom)
2021/08/28 Healthcare professionals¿ views about responsibility in the sharing of genetic information to patients' relatives
European Society of Human Genetics (Virtual meeting)
2020/07/01 Decisions about reproduction from people at risk for or affected by late-onset neurological diseases. Round-table panel Studies of decision-making in the settings of pregnancy, adoption and predictive genetic testing. COMET 2020 – Communication, Medicine and Ethics Conference
Department of Communication and Psychology - Aalborg University (Aalborg, Denmark)
2019/11/13 Living with or at risk for Machado-Joseph disease in a community of the Tagus valley, Portugal: making decisions about pre-symptomatic testing and reproductive risks MJD International Research Conference: Strengthening Families & Communities through Science & Practice
MJD Foundation (Washington DC, United States)
2019/10/03 Genetic counselling in Portugal: enduring challenges, emerging research II World Congress of Genetic Counselling
(Cambridge, United Kingdom)
2018/11/13 At the interface between human and forensic genetics: some of the questionable uses of DNA outside health care and research EXCHANGE International Conference “Contemporary Challenges to Forensic Genetics in Society
(Braga, Portugal)
2018/05/02 Processes of communication about genetic risks within families affected by late onset neurological diseases i3S post-doc seminar series
i3S (Porto, Portugal)
2017/03/08 From older to younger: Intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy UnderInvestigation: Psicologia & Educação@ua
Universidade de Aveiro (Aveiro, Portugal)
2016/09/25 Apoio psicológico e familiar em casos de ataxias hereditárias I Encontro Ibérico de ataxias hereditárias
Hospitais da Universidade de Coimbra (Coimbra, Portugal)
2016/09 Regional and professional developments and challenges in genomics. Member of a discussion roundtable “Who has the right to my genome: ELSI challenges of citizen participation and public private partnerships in genomics”, COST IS1303 CHIP ME Annual Conference.
(Leuven, Belgium)
2016/06 Twenty years’ experience conducting presymptomatic testing for late-onset neurological diseases: what have we learned? ESHG Conference
(Barcelona, Spain)
2015/12/07 Genetic counselling, nondirectiveness and the communication of genetic risks within the family Seminar
Department of Public Health, Uppsala University (Uppsala, Sweden)
2015/03 Communication of genetic risk information within families: how can systemic family therapy be of help? XXIII IFTA World Family Therapy Congress
(Kuala Lumpur, Malaysia)
2011/11 Empowering staff in dementia long-term care: a psychoeducational approach 39th Congress of European Association of Geriatric Psychiatry
(Porto, Portugal)
2010/09 Moving beyond training: a psychoeducational program for formal caregivers of elderly with dementia 20th Alzheimer Europe Conference - Facing dementia together
(Luxembourg)
2010/03 ProFamilies – Dementia: An Integrated Approach for Elderly People with Dementia and Families XVIII World International Family Therapy Association
(Buenos Aires, Argentina)
2010/01 Programa de Apoio a Cuidadores Formais e Idosos com Demência Congresso de Psiquiatria e Medicina Geral e Familiar e VII Encontro de Psicogeriatria e Cuidados de Saúde Primários
(Lisboa, Portugal)
2009/06 Risco genético em cancros hereditários: intervenção psicoeducativa multifamiliar XXXII Congreso Interamericano de Psicología
(Ciudad Guatemala, Guatemala)
2006/09 Programa de apoio psico-educativo a doentes oncológicos V Congreso Iberoamericano de Psicología Clínica y de la Salud
(San José, Costa Rica)
2005/06 Psycho-educational intervention in multi-families discussion groups: the case of oncology patients AFTA-IFTA International Conference on Family Therapy
(Washington DC, United States)
2005/03 Intervención psicoeducativa familiar en enfermidades cronicas X Congreso Internacional de Educación Familiar
(Las Palmas, Spain)

Supervision

Thesis Title
Role 		Degree Subject (Type)
Institution / Organization
2023/05/01 - Current Deliberating genetic risks: Decision-making and disclosure from genetic counseling to the family
Co-supervisor
Universidade de Aveiro Departamento de Educação e Psicologia, Portugal

Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2023/04/15 - Current Disclosure of genetic risk information to family members: influencing factors in the decision-making process
Co-supervisor
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Universidade do Porto Centro de Psicologia, Portugal
2022/09/15 - Current Preferences of people with inherited genetic conditions and family members toward informing relatives of genetic risk
Co-supervisor
Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2022/09/15 - Current Perceptions of caregivers of people with hereditary ataxia participating in an online narrative support group intervention about their family functioning using SCORE-15
Supervisor
Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2022 - Current Experiences of caregivers of people with hereditary ataxia with an online narrative support group intervention
Supervisor
Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2021/10/01 - Current Experiência individual, familiar e comunitária com a doença de Machado-Joseph em São Miguel, Açores ("Exploring personal, family and community experiences with Machado-Joseph disease in São Miguel, the Azores")
Co-supervisor
 Mestrado em Psicologia da Saúde e reabilitação Neuro-Psicológica (Master)
Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2018/04 - Current Entre_Gerações: transmissão intra- e inter-geracional de comportamentos de promoção da saúde em famílias com doenças hereditárias
Co-supervisor
 Gerontology (PhD)
Centro de Investigação em Tecnologias e Serviços de Saúde, Portugal
2023/06/01 - 2027/05/31 Parent-children communication about genetic risks: towards a youth-friendly approach in genetic counselling
Co-supervisor
Universidade de Aveiro Departamento de Educação e Psicologia, Portugal

Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2016/09/01 - 2017/07/31 Metáforas associadas a viver com doença crónica: o caso da diabetes tipo II
Co-supervisor
Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/09/01 - 2017/07/31 O papel da geração mais velha na promoção de comportamentos de saúde em famílias com paramiloidose
Co-supervisor
 Gerontology (Master)
Universidade de Aveiro Departamento de Ciências Médicas, Portugal
2016/09/01 - 2017/07/31 Secondment in Psychology at CGPP-i3s
Supervisor
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Event participation

Activity description
Type of event 		Event name
Institution / Organization
2022/11/29 - Current Speaker at the round-table entitled "Genetic Counselling and Psychosocial Genetics"
Symposium
 Symposium "Genetic Tests in Context: Persons, Families, Society"
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2021/06/18 - Current Invited discussant at the seminar "Family psychosocial adjustment to hereditary cancer"
Seminar
Universidade do Porto Faculdade de Psicologia e de Ciências da Educação, Portugal
2021/02/06 - Current Presentation of research results. Decisões sobre o teste preditivo e sobre a comunicação do risco genético na família ("Decisions about predictive testing and about communicating genetic risk information in the family").
Other
 Huntington Café.
Associação Portuguesa de Doentes de Huntington, Portugal
2022/01/17 - 2022/01/19 Discussant at the round-table "The educated patient", workshop "Triggers and trends in science communication"
Workshop
 "Triggers and trends in science communication"
Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2019/12 - 2019/12 Comentator to the film "The imortal life of Henrietta Lacks".
Other
 CineISPUP
Universidade do Porto Instituto de Saúde Pública, Portugal
2019/10/04 - 2019/10/04 Moderator to the panel "Research into the Counselling Process".
Conference
 II International Conference on Genetic Counselling
Wellcome Sanger Institute, United Kingdom
2019/01/15 - 2019/01/16 SIENNA Foresight Workshop Genomics: Future impacts and ethical issues. Invited panel of multidisciplinary experts aiming at discussing the ethical, social and legal aspects of genomic technologies. Organised by the EU-funded project "SIENNA, Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact".
Workshop
2019/01 - 2019/01 Comentator to the documentary film “The Code”.
Other
 CineISPUP
Universidade do Porto Instituto de Saúde Pública, Portugal

Jury of academic degree

Topic
Role 		Candidate name (Type of degree)
Institution / Organization
2023/04/10 "Everyday Executive Function in Parkinson and Huntington Disease: a novel ecological approach"
(Thesis) Main arguer
 Filipa Lima Ramos Santos Júlio (PhD)
Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2020/01/25 "Intervening with vulnerable families: Photovoice as collaborative tool"
Thesis Member
 Ana Sofia Rodrigues (PhD)
Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2019/01 "People-centred policy for data governance in gamete donation: access to information by gamete donors and recipients"
(Thesis) Main arguer
 Tiago Maia (Master)
Universidade do Porto Instituto de Saúde Pública, Portugal
2017/11 "Enabling factors of the Community Genetic Health Worker Program in the Fiji Islands"
(Thesis) Main arguer
 Jyotishna Mudaliar (Master)
Universidade do Porto Instituto de Saúde Pública, Portugal
2015/06 "O impacto da doença pediátrica na família: revisão sistemática da literatura"
(Thesis) Main arguer
 Ana Nunes (Master)
Instituto Superior Miguel Torga, Portugal
2014/09 "O impacto da dor crónica no sistema familiar: análise de conteúdo da perspectiva dos médicos"
(Thesis) Main arguer
 Daniela Miranda (Master)
Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2014 "Impacto da dor crónica no sistema familiar: a perspectiva de psicólogos clínicos e investigadores"
(Thesis) Main arguer
 Filipa Beirão (Master)
Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal

Association member

Society Organization name Role
2014 - Current European Huntington's Disease Network Member of the subgroup "Family communication"

Committee member

Activity description
Role 		Institution / Organization
2023/03/15 - Current Committee for Ethical and Responsible Conduct of Research (CECRI)
Member
 Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2022/02/15 - Current Ethical, Legal, Psychosocial Aspects in Genomics (ELPAG) Advisory Committee of the European Society of Human Genetics. Development of proposals, and score abstracts, of the ELPAG stream of the ESHG annual conference.
Member
 European Society of Human Genetics, Austria
2015/06 - Current Public and Professional Policies Committee of the European Society of Human Genetics. Policy work around genetic testing and counselling.
Member
 European Society of Human Genetics, Austria

Course / Discipline taught

Academic session Degree Subject (Type) Institution / Organization
2023/03/27 - Current Abordagens Psicoeducativas em Genética Psicossocial Genética Psicossocial II (Mestrado) Universidade do Porto Instituto de Ciências Biomédicas Abel Salazar, Portugal
2022/05/20 - Current Aspectos psicológicos associados às doenças genéticas ("Psychological aspects of genetics diseases") (Mestrado integrado) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2021/05/10 - Current Aspectos psicológicos associados às doenças genéticas ("Psychological aspects of genetics diseases") Condições Crónicas de Doença e Cuidados Paliativos: Intervenção Psicoterapêutica Sistémica (Mestrado integrado) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2020/11/24 - 2020/11/24 "The communication of genetic information within the family". MSc in Genetic counselling, UC "Psychosocial genetics I". (Mestrado) Universidade do Porto Instituto de Ciências Biomédicas Abel Salazar, Portugal
2020/11/19 - 2020/11/19 "Communicating genetic information with families - ethical perspectives". MSc in Genetic Counselling, UC "Bioethics and genetics". MSC in genetic counselling (Mestrado) Universidade do Porto Instituto de Ciências Biomédicas Abel Salazar, Portugal
2020/05/18 - 2020/05/18 Aspectos psicológicos associados às doenças genéticas (Psychological aspects of genetic diseases) (Mestrado) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2019/05 - 2019/05 Aspectos éticos e sociais do uso de informação genética fora dos contextos da saúde e de investigação Forensic Genetics (Mestrado) Universidade do Porto Faculdade de Ciências, Portugal
2018/04 - 2018/04 “Grupos de discussão multifamiliares em famílias com doenças genéticas hereditárias” (Mestrado integrado) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2017/04 - 2017/04 “Grupos de discussão multifamiliares em famílias com doenças genéticas hereditárias” (Mestrado integrado) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/04 - 2016/04 “Grupos de discussão multifamiliares em famílias com doenças genéticas hereditárias” (Mestrado integrado) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/02 - 2016/02 “Aspectos psicossociais dos cancros hereditários” (Doutoramento) Universidade de Coimbra Faculdade de Medicina, Portugal
2015/02 - 2015/02 “Aspectos psicossociais dos cancros hereditários” (Doutoramento) Universidade de Coimbra Faculdade de Medicina, Portugal
2014/04 - 2014/04 “Aspectos familiares na promoção da saúde em famílias com doenças genéticas hereditárias” (Mestrado integrado) Universidade de Aveiro Departamento de Ciências Médicas, Portugal
2013/04 - 2013/04 “Aspectos familiares na promoção da saúde em famílias com doenças genéticas hereditárias” (Mestrado integrado) Universidade de Aveiro Departamento de Ciências Médicas, Portugal
2013/02 - 2013/02 “Grupos de discussão multifamiliar na doença crónica” (Doutoramento) Universidade de Aveiro Departamento de Ciências Médicas, Portugal

Interview (newspaper / magazine)

Activity description Newspaper / Forum
2018/11/03 Participation in interview “Doenças hereditárias: a ditadura do sangue”, "Expresso", 03.11.2019. Expresso

Interview (tv / radio show)

Program Topic
2020/02/12 - Current Short interview on TV about genetic testing and counselling for rare diseases. Genetic testing and genetic counselling for rare diseases.

Journal scientific committee

Journal title (ISSN) Publisher
2021/06/01 - Current Journal of Community Genetics (1868- 6001) Springer

Scientific expedition

Activity description Institution / Organization
2021/10/01 - Current Participant researcher within the Educational Programme "Ciência e tal". Science engagement with secondary school students. Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
Distinctions

Award

2006 Dr. Rocha Alves Prize on "Research and intervention in oncology"
Liga Portuguesa Contra o Cancro, Portugal

Other distinction

2018 Short-term scientific mission COST Action INTERFASOL IS1311
European Commission Seventh Framework Programme for Research and Technological Development, Belgium
2018 Individual Call to Scientific Employment Stimulus (CEECIND/02615/2017)
Fundação para a Ciência e a Tecnologia, Portugal
2016 Short-Term Scientific Mission, COST Action IS1303 (CHIP ME)
European Commission Seventh Framework Programme for Research and Technological Development, Belgium
2015 Short-Term Scientific Mission, COST Action IS1303 (CHIP ME)
European Commission Seventh Framework Programme for Research and Technological Development, Belgium
2014 Fellowship ESHG to attend the Basic and advanced course on genetic counselling
European Society of Human Genetics, Austria
2012 Postdoctoral fellowship (SFRH/BPD/88647/2012)
Fundação para a Ciência e a Tecnologia, Portugal
2007 Doctoral fellowship (SFRH/BD/38773/2007)
Fundação para a Ciência e a Tecnologia, Portugal
2001 Socrates-Erasmus mobility grant
European Commission, Belgium