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 & MORRISTOWN, N.J.--(BUSINESS WIRE)-- 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).
About Rett Syndrome
Rett syndrome is a severe neurodevelopmental disorder primarily affecting females, with an estimated prevalence of one in 10,000 females. There are no approved treatments available. Rett syndrome is characterized by a loss of acquired fine and gross motor skills and the development of neurological, cognitive and autonomic dysfunction, which leads to loss of ability to conduct daily life activities, walk or communicate. Rett syndrome also is associated with a reduced life expectancy. Approximately 25 percent of the deaths in patients with Rett syndrome are possibly related to multiple cardio-respiratory dysrhythmias that result from brain stem immaturity and autonomic failure. More than 95 percent of these patients have a random mutation in the MeCP2 gene. Episodes of apnea, hyperventilation and disordered breathing are found in approximately 70 percent of patients with Rett syndrome at some stage of their life. For more information on Rett syndrome, visit http://www.rettsyndrome.org.
About Newron Pharmaceuticals
Newron (SIX: NWRN) is a biopharmaceutical company focused on the development of novel therapies for patients with diseases of the central and peripheral nervous system. The company is headquartered in Bresso near Milan, Italy. Xadago® (safinamide) has received marketing authorization for the treatment of Parkinson’s disease in the European Union, Switzerland and the USA, and is commercialized by Newron’s partner Zambon. US WorldMeds holds the commercialization rights in the USA. Meiji Seika has the rights to develop and commercialize the compound in Japan and other key Asian territories. In addition to Xadago® for Parkinson’s disease, Newron has a strong pipeline of promising treatments for rare disease patients at various stages of clinical development, including sarizotan for patients with Rett syndrome and ralfinamide for patients with specific rare pain indications. Newron is also developing Evenamide as the potential first add-on therapy for the treatment of patients with positive symptoms of schizophrenia. For more information, please visit: www.newron.com
About Newron Pharmaceuticals’ 2018 R&D Day
The company will host its 2018 R&D Day in NYC on October 31, 2018 from 10:00am - 1:00pm EDT. This will feature presentations from leading experts in schizophrenia and Rett syndrome, with speakers to be announced. For more information on this invitation only event, please email email@example.com or visit www.newron.com/home/newron-rd-day. A live webcast will be available.
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Source: Newron Pharmaceuticals S.p.A.