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Work Package 1 - Executive committee
Working Package Leaders (WPLs): Dr Vanessa Ferreira and Pf Dr Paula Videira
The objectives of this WP are to manage the network in a fair and transparent manner, ensuring that the deliverables of the projects developed under the scope of CDG & Allies- PPAIN are met in an integrated and timely fashion within the agreed plans and to enable integration of work packages and ensure effective communication between members of the research network. WP1 is led by Dr Vanessa Ferreira and Pr Dr Paula Videira.
Results obtained so far from this research project:
- In total 4 publications from February to October 2016. We expect to finish the year with 6 publications.
- One poster summarizing the work done among CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies-PPAIN) was selected to the Portuguese Society of Inherited Metabolic Diseases held in Coimbra (2016).
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Volunteer Network coordinator advisor: Dr Vanessa Ferreira
Email: sindromecdg@gmail.com
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 in 5 major areas: (1) boosting awareness, (2) uniting and liaising the community, (3) increasing research breakthroughs, (4) building resources (5) and fostering education and empowerment.
She created beneficial actions for CDG community, such as: |
(1) International platform for research, awareness and education named CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN), (2) CDG Global Task Force on Science and Medical Communication and Outreach (HERE), (3) with worldwide CDG patient groups, she is coordinating the request among the World Organization of Health (WHO) to declare 16th May as the annual World Congenital Disorders of Glycosylation (CDG) Awareness Day (all information HERE). Vanessa’s believes in the power of partnership as a mean for a better future for CDG children’s and adults.
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.
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.
Director: Pr Dr Paula Videira
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Glycoimmunology Group @ UCIBIO
Departamento Ciências da Vida Faculdade de Ciências e Tecnologia Universidade Nova de Lisboa 2829-516 Caparica, Portugal Email: p.videira@fct.unl.pt
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Professor Paula Videira received her Ph.D. in Instituto Superior Técnico, Universidade Técnica in 2002. After a post-Doctoral position in the same institution, in 2005 she was invited as assistant professor in the Department of Immunology at Faculdade de Ciências Médicas, Universidade NOVA de Lisboa. She founded the Glycoimmunology research group in 2007, which she leads until today. In 2005 Paula moved to Faculdade de Ciências e Tecnologia and she was appointed as a faculty member, assistant professor.
Her main interests are to conduct research in Glycobiology and Immunology, with the goal of identifying novel therapeutic targets. Her group is interested in identifying the role of aberrant glycosylation in cancer and congenital disorders of Glycosylation and its implications in immune response. The ultimate goal is to develop novel antibody-based and dendritic cell (DC)-based immunotherapies. Paula is presently leading both national and international research projects. She supervises six PhD students and several Master students and post docs. She is an author in more than 50 international peer-review publications.
She is the director of the CDG & Allies - Professionals and Patient Associations International Network. Thus, Paula work in the field of CDG is focused in fomenting awareness and collaborations between professionals and patients advocates. She is also currently investigating CDG associated immunopathology, aiming to identify key mechanisms and to contribute to improve to ameliorate CDG lives. This work is fully supported thanks to the generosity of families and friends who contributed with little donations during the “One CD=One live CDG” crowdfunding campaign done in 2014.
List of current research projects dedicated to CDG:
“GlycoImmunology for CDG and Allies”: more information HERE.
The list of publications with a major impact for CDG research:
- Silva M, Silva Z, Marques G, Ferro T, Gonçalves M, Monteiro M, van Vliet S, Mohr E, Lino AC, Fernandes AR, Lima FA, van Kooyk Y, Matos T, Tadokoro CE and Videira PA. Sialic acid removal from dendritic cells improves antigen cross-presentation and boosts anti-tumor immune responses- Accepted by Oncotargets
- Cabral MG, Silva Z, Ligeiro D, Seixas E. Crespo H, Carrascal M, Silva M, Piteira AR, Paixão P, Lau JTY, Videira PA. 2013 The phagocytic capacity and immunological potency of human dendritic cells is improved by α2,6-sialic acid deficiency. Immunology, 138:235-45; doi: 10.1111/imm.12025.
- Silva Z, Konstantopoulos K, Videira PA. 2012. The Role of Sugars in Dendritic Cell Trafficking. Annals of Biomedical Engineering (invited review, Special Issue). 40:777-89; doi: 10.1007/s10439-011-0448-5.
- Crespo HJ, Cabral MG, Teixeira AV, Lau JTY, Trindade H. Videira PA, 2009. Effect of sialic acid loss on dendritic cell maturation. Immunology. 128: e621-31 (doi:10.1111/j.1365-2567.2009.03047.x)
- Videira PA, Amado IF, Crespo HJ, Alguero MC, Dall’Olio F, Cabral MG, Trindade H. 2008. Surface α2,3- and α2,6-sialylation of human monocytes and derived dendritic cells and its influence on endocytosis Glycoconjugate Journal 25:259-68.
List of current grants focused on CDG:
Crowdfunding “One CD=One live CDG”, 2014
Any Master thesis 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.
Future opportunities and collaborations:
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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