22 Giu NBIA Alliance
More effective together
Key factors to promote research on rare diseases are achieving critical mass, gathering efforts and avoiding redundancies and dispersion of the available resources.
The story of the NBIA Alliance tells a lot about the effective application of these strategies.
The alliance gathers and coordinates the eight existing associations for neurodegeneration with brain iron accumulation syndromes, thus representing the global community of stakeholders for these orphan diseases which were completely neglected until twenty years ago.
Since its foundation in 2012, the NBIA Alliance has been steering actions taken at the na-tional level towards the common goal of triggering research translation into the clinic.
In order to achieve that, the alliance has created an international registry and a biobank which are corroborating the work to define the natural history of the disease, being thus pivotal for activating clinical research.
It has also supported the drafting of good clinical practices for neurodegeneration with brain iron accumulation syndromes and helped funding the development of diagnostic tools for these diseases.
ScienceCompass is assisting the NBIA Alliance in the management of the funding for the international registry and other joint initiatives.