Causes: Brain Disorders, Health, Neurology & Neuroscience
Mission: At Rettsyndrome. org, our mission is to accelerate full spectrum research to cure Rett syndrome and empower families with the information, programs, and connection they need on their journey. We advocate and raise awareness about Rett syndrome so that the scientific and medical community, policymakers, educators, caregivers, and the general public can more thoroughly know, understand, and be motivated to support both our research efforts, and those living with Rett syndrome on a daily basis.
Results: Twenty years ago, there was no known cause, treatment or hope for a cure for Rett syndrome. At the turn of the century, the gene associated with Rett syndrome was discovered and during this most recent decade, there has been an immense amount of progress in Rett syndrome research. We currently have multiple compounds in or preparing for clinical trials and one in Phase 3 – the final step toward becoming the first prescribeable treatment for Rett syndrome. Through our Scout program we are screening an unprecedented number of compounds for potential use in Rett syndrome in faster and more cost-efficient ways. Our clinical network continues to drive research forward and deliver specialized clinical care to our families. We continue to develop new platforms for communicating with and empowering our families. Through our Newly Diagnosed Program, our Rett Research Ready Program, and our RettEd webinars, we are listening and responding to the needs of all of those affected by Rett syndrome and delivering resources that will guide our community to become educated and empowered. We are preparing our community to confidently participate in the clinical trials that will bring treatments and a cure to those with Rett syndrome.
Target demographics: Those living with Rett syndrome or caring for someone with Rett syndrome
Direct beneficiaries per year: Tens of thousands of families, caregivers, and care providers across the globe
Geographic areas served: International Rett syndrome community
Programs: Our Research Program Funds research that will produce treatments and ultimately a cure for Rett syndrome. Additionally, our Family Empowerment Program provides comprehensive educational resources, specialized supports for newly diagnosed families and is developing a network of clinics with the tools and expertise to conduct clinical trials and to ensure that Rett syndrome patients have access to the highest standards of care, wherever they live.
Mission: At Rettsyndrome. org, our mission is to accelerate full spectrum research to cure Rett syndrome and empower families with the information, programs, and connection they need on their journey. We advocate and raise awareness about Rett syndrome so that the scientific and medical community, policymakers, educators, caregivers, and the general public can more thoroughly know, understand, and be motivated to support both our research efforts, and those living with Rett syndrome on a daily basis.
Results: Twenty years ago, there was no known cause, treatment or hope for a cure for Rett syndrome. At the turn of the century, the gene associated with Rett syndrome was discovered and during this most recent decade, there has been an immense amount of progress in Rett syndrome research. We currently have multiple compounds in or preparing for clinical trials and one in Phase 3 – the final step toward becoming the first prescribeable treatment for Rett syndrome. Through our Scout program we are screening an unprecedented number of compounds for potential use in Rett syndrome in faster and more cost-efficient ways. Our clinical network continues to drive research forward and deliver specialized clinical care to our families. We continue to develop new platforms for communicating with and empowering our families. Through our Newly Diagnosed Program, our Rett Research Ready Program, and our RettEd webinars, we are listening and responding to the needs of all of those affected by Rett syndrome and delivering resources that will guide our community to become educated and empowered. We are preparing our community to confidently participate in the clinical trials that will bring treatments and a cure to those with Rett syndrome.
Target demographics: Those living with Rett syndrome or caring for someone with Rett syndrome
Direct beneficiaries per year: Tens of thousands of families, caregivers, and care providers across the globe
Geographic areas served: International Rett syndrome community
Programs: Our Research Program Funds research that will produce treatments and ultimately a cure for Rett syndrome. Additionally, our Family Empowerment Program provides comprehensive educational resources, specialized supports for newly diagnosed families and is developing a network of clinics with the tools and expertise to conduct clinical trials and to ensure that Rett syndrome patients have access to the highest standards of care, wherever they live.
admin@rettsyndrome.org
4600 Devitt Drive, Cincinnati, OH 45246
513-874-3020
Health
Cincinnati
