RD-Connect is a European funded project aiming at facilitating the emergence of integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.
RD-Connect is a transversal project on rare disease, which has been established in 2013 together with two other European funded projects: NEURonomics (neuronal pathologies) and EURenOmics (renal pathologies).
FEDERG is participating to RD-Connect project as active member of the Patient and Advisory committee.
Why FEDERG is active in RD-Connect?
Our first and direct role within the RD-Connect is to represent the overall interest of the patients with regards to the development of the research infrastructure. Basically we are dealing with the needed respect of patient’s rights vis a vis of international use of data and bio samples and the necessity to be efficient the research. It’s a dilemma in which patients are often progressive, while scientist and bureaucracy often conservative.
Why is it so important for FEDERG?
RD-Connect will set the scenes for international exchanges of data in the context of European Rare Disease projects for years to come in terms. FEDERG want to be part of it, and make sure the specificity of our patients are heard.
Then what is the second role?
Our second and indirect role is to increase our capacity and legitimacy as an actor of the medical community on inherited kidney diseases. Being part of RD-Connect under the leadership of EURORDIS is definitely a mean for FEDERG to be recognized as the actor for IKD.
Details to be found at: