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: 

https://www.surveymonkey.com/r/HXRVF63

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-

https://www.amazon.co.uk/gp/aw/d/1983480983/ref=mp_s_a_1_3…

It’s to create awareness and to give it a voice

MRKH World Day

Dia 4 - Testimonial

Here are 2 more testimonials from the 2017 NASPAG Conference! An MRKH physician and patient sharing their experiences!

Dia 3 - MRKH Global Open Letter To Acknowledge Our Advocates

Dia 3

We cannot speak for every advocate – a word that has become part of our day to day vocabulary, but we can assume passion and personal experience fuels this desire for acceptance and change. Advocacy defined as: to give to a cause – a cause that often sits close to personal experience with a desire to see and implement change. For our international MRKH advocates, so much work pours into one post or action. Not to mention the bravery involved. This should not be under-estimated or devalued despite so many international causes deserving of attention. However, in our MRKH sisterhood, we see an invisible bond that requires no introduction or criteria deliverables. And for this, we are so thankful. For each and every one of us, please always take care of you in the midst of this powerful movement of MRKH Support and Awareness.

https://theglobalmrkh.wordpress.com/2018/02/08/an-open-letter-to-acknowledge-our-advocates-take-the-time-for-yo/

Dia 1 e Dia 2- Patient-Centered Care Network for MRKH

Dia 1 e Dia 2:

Hi Everyone!

Thank you for accepting to be a part of this email chain to try to spread MRKH research around the world. We will be emailing content to be posted to all MRKH support pages frequently throughout February. These posts will lead up to a survey which we will launch on March 1st.  The survey will gather information on what YOU want to see in future research regarding MRKH. Please share the posts from these emails to your group to help us spread the word to your members. 

For the first time in history, your MRKH experiences and answers helped impact how MRKH is diagnosed and treated around the world. The survey that you took in 2017 resulted in 1337 responses and was presented to leaders in the gynecological field at the North American Society for Pediatric and Adolescent Gynecology.  Throughout the next few weeks we will post testimonials from physicals, patients and parents that attended the conference: 

Patient-Centered Care Network for MRKH

A equipa Global MRKH contactou-nos para divulgar projectos de estudos sobre o síndrome, assim como a divulgação da criação de um centro de apoio online.

https://www.pcori.org/research-results/2017/building-patient-centered-care-network-mrkh-tier-ii

Durante o mês de Fevereiro iremos colocar os vários documentos e fotografias que nos vão enviando para divulgar/partilhar todos os avanços neste estudo.

Vamos pedir um pouco de paciência na informação partilhada, uma vez que está toda em inglês.

Como é ser Mulher, que nasceu sem útero?

Artigo muito interessante (em inglês) que podem ler AQUI.

Why I Became a Surrogate Mother

A razão de me ter tornado mãe de aluger? (ou em termos mais adequados, porque sou barriga de aluguer?)

Um bom artigo que podem ler AQUI.

Barrigas de aluguer: cometer um crime para poder ser mãe

Em Portugal a lei não permite que uma mulher empreste o útero para que outra possa ser mãe. O DN conta a história de duas mulheres que foram a clínicas no estrangeiro.

Podem ler AQUI.