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My vision is to improve the quality of life of patients with complex and serious conditions through a holistic patient-centric model where key stakeholders include patients and their representatives as full partners throughout the overall Drug Development and Lifecycle of drugs. I actively seek out and listen to the voice of patients, their representatives and advocacy organizations. I strongly believe that in the short term, co-creation will be accepted as a continuous daily practice within pharmaceutical industry. Ultimately, the patient-centric approach opens up more opportunities beyond the molecule and the results will be to deliver better treatment outcomes and the enrichment of patients lives. Partnering with patients is key for pharma success. I am eager and passionate to continue contributing for it! Eleven years of experience identifying, coordinating and seeking ways to collaborate with Key Opinion Leaders (KOLs) in the field of Rare Diseases (RDs). Experience in guiding and assisting the development of non - profit associations and related organizations for chronic diseases. Eleven years of experience in the pharmaceutical sector and business skills acquired through an MBA. MBA Thesis title: "Embracing orphan diseases: a bright pharmaceutical strategy". Two years¿ experience as a Medical Science Liaison in the field of derma-oncology. Four languages (Portuguese Mother tongue. Spanish Native or bilingual proficiency. English Full professional proficiency. French Professional working proficiency). Portuguese and Spanish nationality. Currently working as Head of Patient Advocacy in the field of Rare Diseases (RDs) for Europe and Rest of World (RoW) namely Australia, South Korea, Israel and so forth.
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Identification

Personal identification

Full name
Vanessa Miriam dos Reis Ferreira

Citation names

  • Ferreira, Vanessa
  • dos Reis Ferreira, Vanessa

Author identifiers

Ciência ID
AE1C-D277-D07E

Addresses

  • Faculdade de Ciências e Tecnologia da Universidade Nova de Lisboa. Quinta da Torre, Campus Universitário, 2829-516, Caparica,, Almada, Portugal (Professional)

Websites

Knowledge fields

  • Medical and Health Sciences - Basic Medicine - Immunology
  • Medical and Health Sciences - Medical Biotechnology - Health-Related Biotechnology
  • Medical and Health Sciences - Health Sciences - Social Biomedical Sciences
  • Medical and Health Sciences - Other Medical Sciences
  • Social Sciences - Other Social Sciences

Languages

Language Speaking Reading Writing Listening Peer-review
Spanish; Castilian (Mother tongue)
Portuguese (Mother tongue)
French Advanced (C1) Advanced (C1) Advanced (C1) Advanced (C1) Upper intermediate (B2)
English Proficiency (C2) Proficiency (C2) Proficiency (C2) Proficiency (C2) Proficiency (C2)
Education
Degree Classification
2012/09/01 - 2014/06/01
Concluded
 International MBA (Master Universitario)
Sorbonne Graduate Business School, France
2005/09/01 - 2010/11/01
Concluded
 Cell and Developmental Biology (Doktor (PhD))
Centre de Regulació Genòmica, Spain
2003/09/01 - 2004/09/01
Concluded
 Pedagogical Aptitude Certificate (CAP) (Diplôme d´études supérieures)
Universidad de Extremadura - Campus Badajoz, Spain
1997/09/01 - 2003/09/01
Concluded
 Biology (Licence)
Major in MsC
Universidad de Extremadura - Campus Badajoz, Spain
2001/09/01 - 2002/09/01
Concluded
 Biochemistry (Maîtrise)
University of Montpellier II, France
Affiliation

Science

Category
Host institution 		Employer
2021/01/01 - Current Coordinating Researcher (Research) UCIBIO Nova School of Science and Technology, FCT NOVA , Portugal
UCIBIO Nova School of Science and Technology, FCT NOVA , Portugal
2016/01/01 - Current Coordinating Researcher (Research) CDG & Allies Professionals and Patient Associations International Network (CDG & Allies PPAIN), Portugal
UCIBIO Nova School of Science and Technology, FCT NOVA , Portugal

Others

Category
Host institution 		Employer
2019 - Current World CDG Organization Founder and Coordinator World CDG Organization, Portugal
2010/01/01 - Current President and founder Association Portuguese Association for CDG (APCDG), Portugal
Projects

Grant

Designation Funders
2019 - Current Frontiers in Congenital Disorders of Glycosylation (FCDGC)
1U54TR002831-01
Researcher
National Institutes of Health, United States
Ongoing
2018 - Current EUROGLYCAN-omics, under the frame of E-Rare-3, the ERA-Net for Research on Rare Diseases
3M180250
Researcher

Other

Designation Funders
2018 - Current Towards therapeutic approaches for Human Glycosylation Disorders through immunological characterization
SFRH/BD/138647/2018
Supervisor
Fundação para a Ciência e a Tecnologia, Portugal
Ongoing
2017/03/01 - Current Deciphering immunological aspects of Congenital Disorders of Glycosylation (CDG) using a multidisciplinary approach
SFRH/BD/124326/2016
Supervisor
Fundação para a Ciência e a Tecnologia, Portugal
 Fundação para a Ciência e a Tecnologia
Ongoing
Outputs

Publications

Book chapter
  1. Ferreira, Vanessa; Briones, Paz; Vilaseca, Maria-Antonia. "Congenital Disorders of Glycosylation (CDG): from glycoproteins to patient care". In Carbohydrate Chemistry, 124-155. Royal Society of Chemistry, 2012.
    10.1039/9781849734769-00124
Conference abstract
  1. dos Reis Ferreira, Vanessa. "Identifying challenges and proposing solutions for disease models with the Congenital Disorders of Glycosylation Community: A mixed research approach". 2021.
Conference poster
  1. Ferreira, Vanessa. "Towards therapeutic approaches for Human Glycosylation Disorders through immunological characterization". Paper presented in Rare Disease Day Symposium and CDG Family Conference, 2020.
  2. dos Reis Ferreira, Vanessa. "Pascoal, Carlota; Francisco, Rita; Dorinda Marques-da-Silva; Ferreira, Vanessa dos Reis; Jaeken, Jaak; Morava, Eva. "CDG diagnosis: A simplified guide for different stakeholders".". Paper presented in 16th International Symposium of the Portuguese Society for Metabolic Disorders, 2020.
  3. dos Reis Ferreira, Vanessa. "Artificial Intelligence in rare diseases: Is the future brighter?". Paper presented in 16th International Symposium of the Portuguese Society for Metabolic Disorders, 2020.
  4. dos Reis Ferreira, Vanessa. "ImmunoCDGQ: Immunology and CDG Questionnaire for Patients and Caregivers". 2020.
  5. Ferreira, Vanessa. "ImmunoCDGQ: Immunology and CDG Questionnaire for Patients and Caregivers". Paper presented in 1º Congresso Nacional de Doenças Raras, 2019.
  6. Ferreira, Vanessa. "Artificial Intelligence in Rare Diseases: Is the future brighter?". Paper presented in 1º Congresso Nacional de Doenças Raras, 2019.
  7. Ferreira, Vanessa. "Adaptive parenting strategies in CDG families". Paper presented in 1º Congresso Nacional de Doenças Raras., 2019.
  8. Ferreira, Vanessa. "12 (and more) topics on Congenital Disorders of Glycosylation: CDG&Allies-PPAIN: an initiative of CDG families in collaboration with healthcare professionals". Paper presented in 12 Topics in Rheumatology, 2019.
  9. Ferreira, Vanessa. "Towards therapeutic approaches for Human Disorders of Glycosylation through immunological characterization". Paper presented in Ciência 2019, 2019.
  10. Ferreira, Vanessa. "Outcomes measures for clinical trials in rare diseases: PMM2-CDG as a model". Paper presented in International scientific CDG symposium, 2018.
  11. dos Reis Ferreira, Vanessa. "Therapies for congenital disorders of glycosylation: a systematic review". Paper presented in Symposium from the Portuguese Society of Metabolic Disease, 2018.
  12. dos Reis Ferreira, Vanessa. "CDG & Allies – Professionals and Patient Association International Network (CDG&Allies-PPAIN): an initiative of CDG families in collaboration with CDG healthcare professionals". Paper presented in ECRD - European Conference on Rare Diseases and Orphan drugs,, 2018.
  13. dos Reis Ferreira, Vanessa. "Congenital Disorders Of Glycosylation And The Liver - Literature Review and Online Questionnaire". Paper presented in Symposium from the Portuguese Society of Metabolic Disease, 2017.
  14. dos Reis Ferreira, Vanessa. "CDG & Allies – Professionals and Patient Association International Network (CDG&Allies-PPAIN): an initiative of CDG families in collaboration with CDG healthcare professionals". Paper presented in International Scientific CDG Symposium, 2017.
  15. dos Reis Ferreira, Vanessa. "Eye involvement in Congenital Disorders of O-Glycosylation – A systematic literature review". 2017.
  16. dos Reis Ferreira, Vanessa. "Outcomes Measures for clinical trials in rare diseases: PMM2-CDG as a model". Paper presented in International Scientific CDG Symposium, 2017.
  17. dos Reis Ferreira, Vanessa. "Probing the extent of liver involvement in Congenital Disorders of Glycosylation (CDG) through an electronic patient/caregiver questionnaire". Paper presented in International Scientific CDG Symposium, 2017.
Journal article
  1. Brasil, Sandra; Neves, Cátia José; Rijoff, Tatiana; Falcão, Marta; Valadão, Gonçalo; Videira, Paula A.; dos Reis Ferreira, Vanessa. "Artificial Intelligence in Epigenetic Studies: Shedding Light on Rare Diseases". Frontiers in Molecular Biosciences 8 (2021): http://dx.doi.org/10.3389/fmolb.2021.648012.
    10.3389/fmolb.2021.648012
  2. Cardão, Carolina; Barros, Luísa; Francisco, Rita; Silva, Dorinda; Ferreira, Vanessa Reis. "Experiences of parents with children with congenital disorders of glycosylation: What can we learn from them?". Disability and Health Journal (2021): 101065. http://dx.doi.org/10.1016/j.dhjo.2021.101065.
    10.1016/j.dhjo.2021.101065
  3. Altassan, Ruqaiah; Radenkovic, Silvia; Edmondson, Andrew C.; Barone, Rita; Brasil, Sandra; Cechova, Anna; Coman, David; et al. "International consensus guidelines for phosphoglucomutase 1 deficiency ( PGM1-CDG ): Diagnosis, follow-up, and management". Journal of Inherited Metabolic Disease 44 1 (2020): 148-163. http://dx.doi.org/10.1002/jimd.12286.
    10.1002/jimd.12286
  4. Francisco, Rita; Pascoal, Carlota; Marques-da-Silva, Dorinda; Brasil, Sandra; Pimentel-Santos, Fernando M.; Altassan, Ruqaiah; Jaeken, Jaak; et al. "New Insights into Immunological Involvement in Congenital Disorders of Glycosylation (CDG) from a People-Centric Approach". Journal of Clinical Medicine 9 7 (2020): 2092. http://dx.doi.org/10.3390/jcm9072092.
    10.3390/jcm9072092
  5. Brasil, Sandra; Pascoal, Carlota; Francisco, Rita; dos Reis Ferreira, Vanessa; A. Videira, Paula; Valadão, Gonçalo. "Artificial Intelligence (AI) in Rare Diseases: Is the Future Brighter?". Genes 10 12 (2019): 978. http://dx.doi.org/10.3390/genes10120978.
    10.3390/genes10120978
  6. Pascoal, Carlota; Francisco, Rita; Ferro, Tiago; dos Reis Ferreira, Vanessa; Jaeken, Jaak; Videira, Paula A.. "CDG and immune response: From bedside to bench and back". Journal of Inherited Metabolic Disease 43 1 (2019): 90-124. http://dx.doi.org/10.1002/jimd.12126.
    10.1002/jimd.12126
  7. Francisco, Rita; Pascoal, Carlota; Marques-da-Silva, Dorinda; Morava, Eva; Gole, Glen A.; Coman, David; Jaeken, Jaak; dos Reis Ferreira, Vanessa. "Keeping an eye on congenital disorders of O-glycosylation: A systematic literature review". Journal of Inherited Metabolic Disease 42 1 (2019): 29-48. http://dx.doi.org/10.1002/jimd.12025.
    10.1002/jimd.12025
  8. Altassan, Ruqaiah; Péanne, Romain; Jaeken, Jaak; Barone, Rita; Bidet, Muad; Borgel, Delphine; Brasil, Sandra; et al. "International clinical guidelines for the management of phosphomannomutase 2-congenital disorders of glycosylation: Diagnosis, treatment and follow up". Journal of Inherited Metabolic Disease 42 1 (2019): 5-28. http://dx.doi.org/10.1002/jimd.12024.
    10.1002/jimd.12024
  9. Pascoal, Carlota; Brasil, Sandra; Francisco, Rita; Marques-da-Silva, Dorinda; Rafalko, Agnes; Jaeken, Jaak; Videira, Paula A.; Barros, Luísa; dos Reis Ferreira, Vanessa. "Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review". Orphanet Journal of Rare Diseases 13 1 (2018): http://dx.doi.org/10.1186/s13023-018-0953-9.
    10.1186/s13023-018-0953-9
  10. Brasil, Sandra; Pascoal, Carlota; Francisco, Rita; Marques-da-Silva, Dorinda; Andreotti, Giuseppina; Videira, Paula; Morava, Eva; Jaeken, Jaak; dos Reis Ferreira, Vanessa. "CDG Therapies: From Bench to Bedside". International Journal of Molecular Sciences 19 5 (2018): 1304. http://dx.doi.org/10.3390/ijms19051304.
    10.3390/ijms19051304
  11. Francisco, R.; Marques-da-Silva, D.; Brasil, S.; Pascoal, C.; dos Reis Ferreira, V.; Morava, E.; Jaeken, J.. "The challenge of CDG diagnosis". Molecular Genetics and Metabolism 126 1 (2018): 1-5. http://dx.doi.org/10.1016/j.ymgme.2018.11.003.
    10.1016/j.ymgme.2018.11.003
  12. Ferreira, Vanessa. "An Electronic Questionnaire for Liver Assessment in Congenital Disorders of Glycosylation (LeQCDG): A Patient-Centered Study". JIMD Reports 44 (2018): 55-64. https://pubmed.ncbi.nlm.nih.gov/30008170/.
    Published • 10.1007/8904_2018_121
  13. de Freitas, Cláudia; dos Reis, Vanessa; Silva, Susana; Videira, Paula A.; Morava, Eva; Jaeken, Jaak. "Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation". BMC Health Services Research 17 1 (2017): http://dx.doi.org/10.1186/s12913-017-2625-1.
    10.1186/s12913-017-2625-1
  14. Marques-da-Silva, D.; Francisco, R.; Webster, D.; dos Reis Ferreira, V.; Jaeken, J.; Pulinilkunnil, T.. "Cardiac complications of congenital disorders of glycosylation (CDG): a systematic review of the literature". Journal of Inherited Metabolic Disease 40 5 (2017): 657-672. http://dx.doi.org/10.1007/s10545-017-0066-y.
    10.1007/s10545-017-0066-y
  15. Marques-da-Silva, D.; dos Reis Ferreira, V.; Monticelli, M.; Janeiro, P.; Videira, P. A.; Witters, P.; Jaeken, J.; Cassiman, D.. "Liver involvement in congenital disorders of glycosylation (CDG). A systematic review of the literature". Journal of Inherited Metabolic Disease 40 2 (2017): 195-207. http://dx.doi.org/10.1007/s10545-016-0012-4.
    10.1007/s10545-016-0012-4
  16. Monticelli, Maria; Ferro, Tiago; Jaeken, Jaak; dos Reis Ferreira, Vanessa; Videira, Paula A.. "Immunological aspects of congenital disorders of glycosylation (CDG): a review". Journal of Inherited Metabolic Disease 39 6 (2016): 765-780. http://dx.doi.org/10.1007/s10545-016-9954-9.
    10.1007/s10545-016-9954-9
  17. Ferreira, V.; Reis, C. A.; Perez, S.; Rauter, A. P.; Videira, P. A.. "Meeting report on EMBO Workshop: Glycobiology and glycochemistry, applications to human health and disease". Glycobiology 24 9 (2014): 782-783. http://dx.doi.org/10.1093/glycob/cwu070.
    10.1093/glycob/cwu070
  18. Vanneste, David; Ferreira, Vanessa; Vernos, Isabelle. "Chromokinesins: localization-dependent functions and regulation during cell division". Biochemical Society Transactions 39 5 (2011): 1154-1160. http://dx.doi.org/10.1042/bst0391154.
    10.1042/bst0391154
Activities

Oral presentation

Presentation title Event name
Host (Event location)
2021 From rare disease families and professional challenges, to data science, AI and data integration: 7 secrets for life changing solutions
MSI Seminar, Université Côte d'Azur
2017 How Patient Centricity shapes the Future of Healthcare in Portugal: Results from CDG & Allies PPAIN
2015 Vanessa Ferreira - Portuguese Association for CDG: Addressing the needs of the community 2nd World Conference on CDG
Portuguese Association for CDG

Event organisation

Event name
Type of event (Role) 		Institution / Organization
2016 - Current World CDG Awareness Day (2021)
2021 - 2021 5th World Conference on CDG (2021 - 2021)
2019 - 2019 4th World Conference on CDG (2019 - 2019)
2018 - 2018 Educational Program of Excellence on Congenital Disorders of Glycosylation, Think Metabolic, Think CDG Academy (2018 - 2018)
2017 - 2017 3rd World Conference on CDG (2017 - 2017)
Conference (Co-organisor)
2016 - 2016 Educational Program of Excellence on Congenital Disorders of Glycosylation, Think Metabolic, Think CDG Academy (2016 - 2016)
2015 - 2015 2nd World Conference on CDG (2015 - 2015)
2014 - 2014 Coordination II Symposium on rare diseases – Joining all stakeholders to discuss Human Genetic Diseases (2014 - 2014)
2013 - 2013 1st World Conference on CDG (2013 - 2013)
Conference (Co-organisor)
2012 - 2012 Symposium on Rare Diseases: “Assessing the involvement of all stakeholders to improve healthcare (2012) (2012 - 2012)

Event participation

Activity description
Type of event 		Event name
Institution / Organization
2020/09 - 2020/10 Noite europeia do Investigador 2020 - Os açúcares RARAMENTE fazem Mal?! Os açucares são muito abundantes na natureza. Podem ser mais ou menos complexos e ter muitas funções. Recentemente, o seu papel negativo na saúde tem tido maior visibilidade, mas...será sempre assim? Sugars are very abundant in nature. They can be more or less complex and have many different functions. Recently, their negative role in health has become more visible, but...will it remain that way? Noite europeia do Investigador 2020

Association member

Society Organization name Role
2017 - Current Member of the patient board and the patient steering committee at the European Reference Network for rare metabolic diseases (MetabERN)
2010/01/01 - Current APCDG-DMR is led by affected family members that volunteer in an altruistic manner. We are a nonprofit-organization aimed at fostering breakthrough research that make an important difference in the lives of patients and their family members. Our actions are performed at the national and international level. President and Founder

Interview (newspaper / magazine)

Activity description Newspaper / Forum
2020 A minha irmã vive com a forma mais comum de CDG Atlas da Saúde
2020 Vanessa Ferreira caminha na Via Algarviana para angariar fundos para investigação em doenças raras PlanetAlgarve
2019 Patients as partners-paving the way for scientific discoveries Rare Revolution Magazine

Interview (tv / radio show)

Program Topic
2020/07 - Current Júlia Pinheiro Experiência de vida
Distinctions

Other distinction

2006 PhD Research Studentship
2001 Erasmus scholarship