Work Package 7– CDG psychology and educational research

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CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies-PPAIN)
Working Group (WG) Health psychology 
Working Group (WG) Educational Special Needs and Inclusion
Working Group (WG) Language development and reading and writing acquisition

Working Group (WG) Language development
and reading and writing acquisition

Working Group Leader (WGL): Isabel Leite, (Évora University, Portugal).

About PF Isabel Leite
Pf Isabel Leite, University of Évora

Email: imss@uevora.pt

Biography:
Pf. Isabel Leite received her/his Ph.D. in February from the University of Évora in 2010. After completion of her degree she was appointed as a Faculty Member in the Department of Psychology at the University of Évora. In 2013, Isabel Leite was appointed as Diretor of the Master in Special Education Needs. Her interests are focused on Psycholinguistics and Education. In particular she is currently working on how scientific studies of reading can contribute to improving the teaching of reading in normally developing children and children with dyslexia as well as in illiterate adults. She hopes to contribute for CDG lives by helping to understand how an evidence-based approach to teaching reading is implemented and how we can improve the quality of teaching on affected individuals. Isabel Leite is an Academic Editor at PSIQUE and is a member of the Executive Steering Committee of EDULOG, the Think Tank for Education of Fundação Belmiro de Azevedo. 
Results obtained so far from this research project:
  • Under the scope of a master degree program in health psychology, we are selecting a student to start a master's thesis on September 2016. This involves conducting research for the pilot study conducted by the main investigator of this WGL.
Currently, we are identifying and actively applying for funding to be able to move forward. If you wish to donate for our continuous research efforts please go HERE.
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 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). ​
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.

Future opportunities and collaborations:

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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.

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