sexta-feira, 2 de março de 2018

The Global MRKH Consortium Team proudly presents the 2018 survey!



Today is the big launch day of our second survey and we are super excited to show you what we have been up to with our AWESOME survey to improve mental health and quality of life for women with MRKH! Who is ready to use their voice to make a positive impact and create change for the MRKH community?
The Global MRKH Consortium Team proudly presents the 2018 survey! Last year we took your 1,337 survey responses, scrolled through thousands of comments and developed your stories into a 37-page analysis report. We shared your responses with a global network of Health Care professionals at the North American Society for Pediatric and Adolescent Gynecology, and we’re ready to do it again because your story matters!
Below is the link to the survey where you can help us understand a few of the following things;
Mental health and quality of life in women with MRKH
The role of peer support for women with MRKH
Develop accessible resources to improve diagnosis and ongoing care for women with MRKH
Experiences of vaginal lengthening treatment in women with MRKH
The relationship between parent and patient adjustment in women with MRKH
We didn’t want to be alone. We don’t want to do it alone. This is our movement and this is why we are so pleased we found you.

Link to survey for patient and parent completion

Dia 6 e Dia 7

Dia 6 - Here is the last testimonial from the 2017 NASPAG Conference! We hope you enjoyed hearing about the patients, parents, and physician’s experiences! Looking forward to another great conference in April 2018.


Dia 7 - Hi Everyone! Check out this new book available on Amazon which is an inspirational story about a woman with MRKH.
Rebekah Knight from Northern Ireland wrote a book about her journey with MRKH. Story based on a true inspirational story about a woman who discovers she was born with a very unique condition. This missing body part of the title will be revealed in due course as you keep reading through the journey. This book will help women and parents of daughters who might be going through a similar experience. 
It is out in AMAZON NOW! Amazon sites around the world!
Click Link below-
It’s to create awareness and to give it a voice