Newron Dedicates Efforts to Research and Advocacy During Rett Awareness Month in October
Families come together to share patient experience and treatment needs at an international conference in Rome, Italy
Milan, Italy and Morristown, NJ, USA – October 8, 2018 - Newron Pharmaceuticals S.p.A. (“Newron”) (SIX: NWRN), a biopharmaceutical company focused on the development of novel therapies for patients with diseases of the central nervous system, is pleased to support Rett Syndrome Awareness Month 2018. Ahead of the month, Newron participated at the international conference, “Rett Syndrome Research, Towards the Future” in Rome on September 27-29, 2018. This conference brought together the latest findings from researchers internationally, and importantly, involved the perspective of caregivers of Rett syndrome patients, who discussed how caregivers are also impacted by the disease.
“Ever since our five-year old daughter started having Rett syndrome-related breathing apneas, our life has become extremely complicated,” said Michele and Giuditta Baruffaldi. “Family and friends who once used to help us look after Margherita are now afraid to be alone with her. This summer, what we thought was a simple case of bronchitis ended up as a week’s hospitalization for our daughter because doctors, who have little knowledge of Rett syndrome, were afraid to send her home as her oxygen saturation levels were too low. What we as families know to be 'Rett-related' medical conditions, others do not understand.”
The efforts made to treat and support Rett patients were commented on by Salvatore Franzè, President of PRORETT Ricerca in Italy who stated: “As a father of a seven-year old daughter with Rett syndrome, it is comforting to see the search for treatments today that may improve the lives of patients with Rett syndrome and their families, as well as progress through research on the challenges and impacts facing the global Rett community.”
At the conference, Newron’s Vice President of Commercial Affairs, Dennis Dionne, provided an update on the progress of the first International Burden of Disease (BOD) study, which is being performed in parallel to the Company’s Phase 3 pivotal “Sarizotan Treatment of Apneas in Rett Syndrome (STARS) Study.” The BOD study is designed to collect the currently missing information on the human and financial cost of Rett syndrome from physicians, caregivers, and health workers, under the guidance of experts.
Newron remains deeply committed to pursuing new treatments and a better life for patients with Rett syndrome. Further details of the emerging findings from the STARS study will be presented at Newron’s 2018 R&D Day, which will be held on October 31 in New York City (please see below for additional information).