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.