Patient Advocacy Groups
Patient Advocacy Groups (PAGs) play an instrumental role in helping individuals and families navigate a diagnosis of an X&Y chromosome variation. Whether through opportunities for education or support, PAGs unite individuals and families by providing guidance and resources that can make a significant impact. Below are several dedicated PAGs representing various X&Y chromosome variations that collaborate together in the NASCARR consortia.
Association for X and Y Chromosome Variations (AXYS)
The mission of AXYS is to help individuals with one or more extra X and/or Y chromosomes and their families to lead fuller, more productive lives.
Turner Syndrome Global Alliance
Turner Syndrome Global Alliance (TSGA) aims to have a direct impact on the lives of girls, women, and families living with TS by working to include TS in the national conversation on genetic research. TSGA aims to be a voice for a patient and parent perspective and supportrs collaboration with scientists, researchers, and doctors to ensure that TS research and resources have meaningful outcomes.
Living with XXY
The goal of Living with XXY is to change the way the world views Klinefelter syndrome/47,XXY by focusing on community, awareness, and positive traits.
The XXYY Project
The XXYY Project offers support groups, patient networking, and patient advocacy to affected individuals and families.
Turner Syndrome Foundation
The mission of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.
Turner Syndrome Society of the US
The Turner Syndrome Society's mission is to advance knowledge, facilitate research, and support all those touched by Turner syndrome.
Turner Syndrome Colorado
Turner Syndrome Colorado's mission is to connect individuals and families in the Turner syndrome community and create and support local resources, including a Turner syndrome clinic program.
Turner Syndrome Carolinas
The purpose of Turner Syndrome of the Carolinas is to create awareness and knowledge, promote research, and provide support for all those touched by Turner syndrome in the Carolinas and beyond.
Chromodiversity Foundation
The Chromodiversity Foundation aims change how the world perceives and supports genetic differences and to help kids and families navigate their unique journeys with confidence and understanding.