Macchia (OMaR): “Financing the National Plan and approving decrees implementing the Consolidated Law”

“The new Parliamentary Intergroup for Rare Diseases chaired by the honorable Boschi has the important legacy of Senator Binetti and many responsibilities, because it will have to supervise the full implementation of some regulations. First of all, the Consolidated Law on Rare Diseases, which needs four further implementing decrees to be fully operational.The second thing is the National Plan for Rare Diseases, which will have to be the framework within which to organize assistance for rare patients for the next three years: it must be approved quickly and financed in order to be truly Lastly, the expansion of the neonatal screening panel”. So Francesco Macchia, vice president of the Rare Disease Observatory, on the sidelines of the ninth edition of the OMaR Award.