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WP8 – CDG Lobby and Representation
CDG & Allies - Professionals and Patient Associations
International Network (CDG & Allies-PPAIN)
Working group (WG) Medical Sociology
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Working group (WG) CDG patient Representatives
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Working group (WG) CDG patient Representatives
Several members of our network are CDG patient Representative among different national and European initiatives. This ensures that the CDG community’s needs have the chance to be transmitted at different levels, for instance:
- The European Reference Networks which aims at joining the best specialists from across Europe to tackle complex or rare medical conditions that require highly specialized healthcare and a concentration of knowledge and resources. A member of the CDG & Allies-PPAIN, is among the Patient Representatives of the Rare Hereditary Metabolic ePAGs (European Patient Advocacy Groups). Collectively, ePAGs represent the perspective and interests of European rare disease patient organisations associated with European Reference Network (ERN). For more information HERE.
- The Universal Accessibility Group of CERMI (Spanish Committee for People with Disabilities) as representative for FEDER (Spanish Rare Disease Federation).
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:
SSIEM Rome 2016: Maria Monticelli reports back
The Society for the Study of Inborn Errors of Metabolism (SSIEM) is an expert insitution, whose annual meetings are of the utmost importance for the medical, scientific and general communities. This year the CDG community was represented by APCDG, being Maria Monticelli (APCDG Volunteer) the Face and Voice for CDG Patients and Families.
Based on what Maria saw, learned and did at SSIEM Rome 2016, she wrote a report, so that the entire CDG community and the general public could have access to the information and knowledge that were exchanged during this relevant scientific gathering.
Access the information by downloading the document below:
Based on what Maria saw, learned and did at SSIEM Rome 2016, she wrote a report, so that the entire CDG community and the general public could have access to the information and knowledge that were exchanged during this relevant scientific gathering.
Access the information by downloading the document below:
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Rita Francisco is the CDG Patients Voice at the MetabERN (the European Reference Network for Rare Inherited Metabolic Disorders)
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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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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 |
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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