The Beautiful You MRKH Foundation, Building an Empowered Patient Community: Tackling Health Care for All Affected by MRKH along with
Global MRKH and Sisters for Love MRKH Foundation, is pleased to showcase some of the results from the recent survey you just completed! This project is part of a larger effort led by these three organizations to improve care for all affected by MRKH. We presented these results on April 21st, 2017 at an MRKH workshop at the North American Society for Pediatric and Adolescent Gynecology (NASPAG) Meeting in Chicago, IL, USA.
In 2018, Global MRKH completed their second year of study, exploring Comparative Effectiveness Research objectives, as ranked by patients and parents. A full report available by emailing firstname.lastname@example.org
In 2014, the Sisters for Love MRKH Foundation formed a research partnership with the University of Queensland to conduct a pilot study to identify the genetics responsible for MRKH, following an approved submission for research funding. This funding has been further extended to continue with this research heading into 2018.
Over the recent weeks, we as the Sisters for Love founders, have been involved in a number of discussions with Professor Peter Koopman and Dr Emanuele Pelosi. Professor Koopman is in the Division of Molecular Genetics and Development at the Institute for Molecular Bioscience, University of Queensland.
The study will be conducted confidentially, with the approval of the UQ Human Research Ethics Committee, and in accordance with the Australian Code for the Responsible Conduct of Research. We aim collectively, to recruit approximately 13 women and their parents in the state of Queensland to be part of this research, collecting a 10ml blood sample by registered nurses or medically qualified doctors.
If you wish to be involved with this study, please may I ask you to email email@example.com where further documentation and information will be released.