Apply now for early access... One of the biggest challenges for parents who have a child with a genetic difference is to get the right support, at the right time, in the right place.
That’s why My XXY | Chromodiversity Foundation has developed Chromodiversity™ for Families & Clinics: an easy to use, remote tool designed to help parents and professionals around the world support children with genetic differences.
Created in partnership with Australian X and Y Spectrum Support (AXYS) and Klinefelter Syndrome Association (UK), with the support of leading organizations such as Aarhus University Hospital (Denmark), Australian Genomics, Children’s Hospital Colorado eXtraordinarY Kids Clinic (USA), the GSVN (Victoria) and MCRI (Australia), it is the first time ever a resource like this is set to be made available to a massively underserved community.
Parents who apply will receive an invitation within 12 weeks to try out the experimental version of 'Chromodiversity for Families’, including:
Gold standard social and emotional well-being checklists
Immediate results & individualized reports
Easy sharing with healthcare & educational professionals.
Following the trial, participants will be asked to answer a brief survey and invited to share their experience & insights through a virtual interview or focus group. Findings will be used to improve and validate the tool prior to launch. Total participation time is estimated at 30-60 minutes.
Chromodiversity™ for Families & Clinics aims to help promote strengths, identify early age challenges and improve communication between parents, doctors & educators.
Requirements: parent or legal guardian of a child 0 to 18 years with a diagnosed genetic variation.
Genetic Variations: Klinefelter’s (XXY), Turner’s (X0), Double Y (XYY), Trisomy X (XXX) and other X&Y variations (‘SCAs’). Fragile X, Angelman syndrome, Prader-Willi syndrome, Dup15q and other genetic differences with an occurrence of more than 1 in 20,000 children.
Link: tool.chromodiversity.com
My XXY | Chromodiversity Foundation prioritizes the privacy and security of your data. We adhere to GDPR and HIPAA regulations.
Comments