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Work Package 10 – Donations & Funds
CDG & Allies - Professionals and Patient Associations
International Network (CDG & Allies-PPAIN)
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.
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.
A Biocosmetic for CDG Biomedical Research
An Interview with NABIA Olive Oil Cosmetics CEO, Margarida Lopes
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CDG Research funding remains a major challenge and a pressing unmet need. Government institutions and pharma/biotech companies dedicate very limited funding for research on CDG.
With the goal of overcoming this great barrier, the Portuguese Association for CDG (APCDG) announces a partnership with NABIA Olive Oil Cosmetics (more information visit HERE), being the fundraising campaign "A Biocosmetic for CDG Biomedical Research" the first co-joint initiative. NABIA is a Portuguese start-up that R&D natural, hand-made biocosmetics and will devote 10% of their sales to fund the research done under the scope of our CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies-PPAIN, for more information visit HERE). To know more about NABIA's concept, products, mission, values and the reason for their commitment to CDG Research, read the interview with Margarida Lopes, NABIA's CEO. Meet the person behind the project! Available in english and portuguese: |
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Updates and developments will be announced in APCDG (Facebook Pages, LinkedIN and Twitter) and ©NABIA (Facebook Page) social media channels. The official campaign email, available for orders, is: biocosmeticforesearch@gmail.com
Working Group Coordinator
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. |
The face of the CDG researcher involved in the project “Mapping funding options for research on CDG and Allies”:
About Rita Francisco (2016)
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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 - PPAIN. She is mapping funding options for research on CDG and related diseases, as well as deciphering the heart aspects of CDG. In addition, she is our CDG community social manager.
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Donate NOW!
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Please, consider to make a donation to this unique patient-led international multidisciplinary network, using Paypal, debit or credit card or bank transfer.
For further questions or suggestions please contact: sindromecdg@gmail.com |
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