The ProDGNE meeting 2022 will be a multi-stakeholder opportunity to meet in person, discuss impactful research in an ultra-rare disease like GNE Myopathy (GNEM) and expand the research network while building a long-term partnership where patients are central partners, key drivers and decision makers in R&D. The meeting will be in the 31st of May 2022, in Room Ágora (Library building) at NOVA School of Science and Technology | FCT NOVA.
The meeting aims to expose the most up to date applied knowledge on the field of Sialic Acid Biology and Rare Diseases, namely on GNE Myopathy, a rare genetic muscle disease and Congenital Disorder of Glycosylation (CDG).
The program includes an introduction to the ProDGNE team and project, scientific challenges in GNE Myopathy and ways to build early and meaningful patient partnership in research for rare diseases.
For more information and registration here.
UCIBIO members of the Organising Committee:
ProDGNE is a 3-year transnational pre-clinical research project funded in the framework of the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call 2020. The project ProDGNE is coordinated by Paula Videira, leader of the Glycoimmunology Lab.
The project combines patient experience, complementary, and synergist expertise in glycobiology, biochemistry, medicinal chemistry, clinical pharmacology, -omics, biomarker discovery, pharmaceutical technology, and clinical expertise to develop an innovative therapeutic compound to treat GNE Myopathy, a rare genetic muscle disease affecting young adults.