CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN)
Where families’ own needs and ideas are transformed into research projects.
Objectives:
WP10 is responsible for continuously assessing funding from governmental and related institutions. Unfortunately we have not succeeded yet, mainly due to the rarity of CDG, lack of awareness and because our innovative research approach involves researchers that are relatively new in the field of CDG.
Currently, we rely solely on donations in order to continue our projects.
Thus, mapping relevant funded Research and Development (R&D) options and Stakeholders, is crucial to develop a detailed understanding of what current and previous funding programmes supported CDG and related diseases and to develop a database of relevant researchers, public policy specialists, funding agencies and officials that might potentially interested in developing links with the CDG & Allies - PPAIN initiative.
Currently, we rely solely on donations in order to continue our projects.
Thus, mapping relevant funded Research and Development (R&D) options and Stakeholders, is crucial to develop a detailed understanding of what current and previous funding programmes supported CDG and related diseases and to develop a database of relevant researchers, public policy specialists, funding agencies and officials that might potentially interested in developing links with the CDG & Allies - PPAIN initiative.
Working Group Coordinator
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).
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.
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.
The faces of the CDG researcher involved in the project “Mapping funding options for research on CDG and Allies”:
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. In March 2017, she won a PhD scholarship awarded by Fundação para as Ciências e Tecnologias (FCT) and she is now dedicating herself to unravelling the immunological aspects of CDG. 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). In addition, she is our CDG patient advocate manager and CDG International Patient Relations.
Open position!
Inés Summer Internship CDG for Undergraduate Students:
Currently the WP2 expressed interest in hosting a student to conduct summer research focused on diagnosis for CDG.
This position is available under the scope of the “1st Inés Summer Internship CDG Program for Undergraduate Students”.
This position is available under the scope of the “1st Inés Summer Internship CDG Program for Undergraduate Students”.
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