Worldwide community teams up to boost CDG knowledge : soon many news will be shared

Lisbon, 20 September 2015- CDG patient groups is thrilled to announce that continues teaming up with Rarecommons. CDG is in a relevant moment as for research. The findings obtained so far are of great importance to shape future CDG therapeutic programs. Rarecommons is a research project on metabolic rare diseases, where families and professionals generate scientific knowledge united on a particular disease. As CDG is in a great need to boost clinical research, the resources and surveys to be fulfilled by families will be available in several languages.

CDG and Lowe Syndrome were considered as model diseases to start this project. Outcomes generated so far were: (1) the successful fundraising campaign needed to set up the platform, (2) the robust partnerships set up within families and professionals to create and translate the surveys and (3) altogether, CDG knowledge increased and consequently the reliable findings obtained so far on CDG, shapes the drug development in this complex disease.

Importantly, the project complements the overall existing research projects that are ongoing at this moment in other relevant international CDG laboratories. In addition, contributes to major sharing knowledge and brainstorming amongst CDG professionals.   More information: Website: https://www.rarecommons.org/en