Newron Pharmaceuticals, a biopharmaceutical company focused on the development of novel therapies for patients with diseases of the central and peripheral nervous system, is pleased to support this year’s Rare Disease Day®. Observed today, February 28, Rare Disease Day helps to raise awareness of rare diseases, and in turn improve access to treatments.
As part of its commitment to the rare disease patient community, Newron has partnered with the global Rett community in conducting the ongoing, first International Burden of Disease study. Rett syndrome is a severe neuro-developmental orphan disease with no approved treatment options and overwhelmingly affects girls starting at a very young age. Apneas are an unfortunate feature of Rett syndrome, present in approximately 70 percent of patients, and contribute significantly to other co-morbidities as well as to a reduced quality of life. The study aims to deliver data and analytics to quantify the physical, emotional and financial challenges of Rett syndrome. The results will help identify and guide improved intervention programs and services designed to complement the Rett care pathway.
More information: https://www.newron.com/en