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Work Package 7– CDG psychology and educational research
CDG & Allies - Professionals and Patient Associations
International Network (CDG & Allies-PPAIN)
Working Group (WG) Health psychology
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Working Group (WG) Educational Special Needs and Inclusion
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Working Group (WG) Language development and reading and writing acquisition
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Working Group (WG) Health psychology
Working Group Leader (WGL): Pf Luísa Barros (Professor at Faculdade de Psicologia e de Ciências da Educação. Universidade de Lisboa, Portugal).
The WG led by Pf Barros aims at studying the impact of parental subjective meanings, concerns, coping strategies and health behaviours on CDG children and adults.
The WG led by Pf Barros aims at studying the impact of parental subjective meanings, concerns, coping strategies and health behaviours on CDG children and adults.
Results obtained so far from this research project:
- Under the scope of a master degree program in health psychology, a student will start a master's thesis on September 2016. This involves conducting research for the pilot study conducted by Prf Barros.
- Prof Barros is also developing a complementary research approach with Prof Liz Forbat, which will generate a new research project. Visit HERE for more information.
Any student, research groups, researchers, clinicians, patient organisations or other stakeholders who would like to become more involved within this project, are most welcome to get in touch to discuss possible future opportunities and collaborations. Fulfill the contact form available below:
About Pr Luísa Barros
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Pf Luísa Barros
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Biography:
Prof. Luísa Barros received her Ph.D. in Clinical Psychology from the University of Lisbon, Portugal (1992). After completion of her degree she was appointed as a Faculty Fellow in the Department of Psychology at the University of Lisbon. She is currently a Full Professor of Clinical and Health Psychology at the University of Lisbon and coordinates the Research Group on Health and Clinical Psychology – Familial and Individual Adaptation Processes. Her interests are focused on clinical and pediatric psychology. In particular her laboratory is currently working on understanding how parental processes are related to and affect children’s health and adaptation, both in healthy and chronically ill populations and developing measures of parenting processes and family adaptation.
List of 6 publications in the field of CDG:
List of current grants focused on CDG:
- Pedro,H.; Barros,L. & Pereira,A.I.(2015).Pediatric Immunization Distress: A Cluster Analyses of Children's, Parents' and Nurses' Behaviors During the Anticipatory Phase. The Clinical Journal of Pain. DOI: 10.1097/AJP.0000000000000287.
- Pereira, A. I., Muris, P., Barros, L., Goes, R., Marques, T., & Russo, V. (2015). Agreement and discrepancy between mother and child in the evaluation of children’s anxiety symptoms and anxiety life interference. European Child & Adolescent Psychiatry, 24(3), 327-337. DOI: 10.1007/s00787-014-0583-2.
- Silva,C. & Barros,L. (2014). Pediatric Asthma Management: Study of the Family Asthma Management System Scale with a Portuguese Sample. Children's Health Care, 43: 203-220. Doi: 10.1080/02739615.2013.837822.
- Silva, C.; Barros, L. & Simões,F (2014). Health-related quality of life in pediatric asthma: children’s and parents’ perspectives. Psychology, Health & Medicine,14, 1-15. Doi: 10.1080/13548506.2014.969745
- Pereira, A. I., Barros, L., Muris, P. Mendonça, D. (2013). The Relationships Among Parental Anxiety, Parenting, and Children’s Anxiety: The Mediating Effects of Children’s Cognitive Vulnerabilities. Journal of Child and Family Studies. Doi 10.1007/s10826-013-9767-5.
- Silva,C. & Barros,L. (2013). Asthma knowledge, subjective assessment of severity and symptom perception in parents of children with asthma. Journal of Asthma. Doi:10.3109/02770903.2013.822082
List of current grants focused on CDG:
- Currently coordinating the Project: PainLess: OI youngsters take control, funded by the U.K.Brittle Bones Society, UL. (2015-2016).
About Merell Liddle
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Merell Liddle has a BA in Politics and Economics and a Post Grad Dip in Securities Markets. She spent 15 years working in the areas of merchant banking, money market and takeovers regulation. She then completed a degree in Psychology and a Post Grad Dip in Health Psychology whilst having a family that included a child with complex disabilities who was later diagnosed as having CDG. Ms Liddle has a particular interest in speech and communication disabilities and has been active in the area of Augmentative and Alternative Communication. She has been extensively involved in CDG patient advocacy,support, and education and is committed to collaborative research to develop safe, effective therapies and treatments for CDG.
About Vanessa Ferreira
From her unique perspective of being a sister of a patient with a rare disease named Congenital Disorders of Glycosylation (CDG) and Cell Biologist, Vanessa founded the Portuguese CDG Association and other Rare Metabolic Disorders (APCDG-DMR).
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Vanessa’s personal journey with her sister, combined with the community needs, have been the impetus to focus the APCDG activities.
Vanessa received a bachelor’s degree in Biological Sciences from Badajoz University (Spain). She holds a PhD (Sc.D.) in Cell and Developmental Biology from the Center for Genomic Regulation, University of Pompeu Fabra, Biomedical Research Park in Barcelona (PRBB). In 2014, she completed her background with an International MBA from IAE de Paris, Sorbonne Graduate Business School |
About Carolina Cardão
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Carolina Cardão is finishin her MSc's degree in Clinical and Health Psychology in the Faculty of Psychology of the University of Lisbon.
Currently, she doing an apprenticeship at the Hospital Curry Cabral, in Lisbon. Her MSc's thesis, which is being coordinated and supervised by Pf Luísa Barros, is about the psychological impact of living with CDG, aiming to study the impact of the parental subjective meanings, concerns, coping strategies and health behaviors on CDG families. |
About Dorinda da Silva
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Dr da Silva, received her Biochemistry degree in University of Algarve – Faro, Portugal. She defended her PhD thesis on “Study of redox and calcium transport systems microdomains in the plasma membrane of neurons”, in University of Extremadura – Badajoz, Spain. Her work is developed under the scope of the CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies – PPAIN).She integrated our working group since beginning February 2016. Dr Dorinda is highly motivated to make a difference in patients lives.
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About Rita Francisco
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Rita Francisco has a Masters’ degree in Molecular Genetics by the University of Minho and among her main scientific interests are genetic disorders. In 2016, she was awarded the 3rd Liliana Scientific Scholarship. Rita is highly driven and motivated to make a difference in the lives of adults and children living with Congenital Disorders of Glycosylation (CDG). Her work is developed under the scope of the CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies – PPAIN). She is deciphering the heart aspects of CDG. In addition, she is our CDG community social manager.
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Future opportunities and collaborations:
Support our research, advocacy, awareness and education efforts now!
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Our work is publicly available to help the CDG community and related rare disease communities. Importantly, we do not receive government funding. We rely solely on donations in order to continue our projects. Consider to make a donation using Paypal, debit or credit card or bank transfer. |
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