Science Compass | NBIA Alliance
Per stimolare la ricerca sulle malattie rare è fondamentale creare massa critica, concentrare gli sforzi ed evitare duplicazioni e dispersioni delle risorse disponibili. La storia di NBIA Alliance (http://nbiaalliance.org/) è un brillante esempio dell’applicazione efficace di queste strategie.
Science Compass, NBIA Alliance, ricerca sulle malattie, sindromi neurodegenerative da accumulo di ferro, patologie ultra-rare, tircon, Treating Iron-Related Childhood Onset Neurodegeneration, biobanca,
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NBIA Alliance/en

Logo 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 (http://nbiaalliance.org/) 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 (NBIA) disorders, thus representing the global community of stakeholders for these orphan diseases which were completely neglected until twenty years ago.

Since its foundation in 2012 fostered by the EU-funded project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), the NBIA Alliance has been steering actions taken at the international level towards the common goal of triggering research translation into the clinic.

In order to achieve that, members of the Alliance supported the drafting of good clinical practices for NBIA disorders.

 

In addition, the Alliance is fostering the growth of the NBIA research community by supporting travel grants for young investigators to attend international meetings focused on NBIA. More recently, the Alliance agreed to sustain and further develop an international registry and a biobank which are corroborating the work to define the natural history of these disorders, being thus pivotal for activating clinical research.

 

Science Compass is assisting the NBIA Alliance in the management of the funding for the international diseases registry and other joint initiatives.