OUR STORY

 

Mayer-Rokitansky-Küster-Hauser syndrome, or MRKH, is a rare condition affecting about one in 5,000 people assigned female at birth worldwide. It involves the absence or underdevelopment of the uterus and vagina, impacting fertility, self-esteem, mental health and intimate relationships.

 

Although MRKH is rare, the global community is growing, supported by several dedicated charities, advocacy groups and passionate individual community builders who work tirelessly to raise awareness and provide support. 

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People with MRKH often seek guidance on stigmatised topics such as dilation, sexual health, relationships and coping with infertility. Many experience feelings of isolation and prefer to maintain privacy, sharing their stories within trusted spaces.

 

Across the internet, there are dozens of Facebook groups, group chats, forums and social media communities where individuals, advocates and charities connect, share experiences and offer encouragement.

 

Our community is strengthened by the courage and collaboration of individuals and organisations alike, united by a shared commitment to support, understanding and empowerment. The MRKH community is vibrant, resilient and full of stories. Meet our team and read more from our community.

 

OUR PROBLEM

 

Despite MRKHers' vibrancy, our shared experiences, support and resources are scattered across countless social media groups, chat threads and isolated platforms. Many seek help in places not tailored specifically to MRKH, which can lead to feelings of loneliness and create distance within the community. This fragmentation makes it difficult to feel a true sense of belonging, build meaningful relationships or access personalised tools that genuinely support wellbeing.

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As MRKHers, we know what it feels like to navigate this journey alone, despite the many voices around us. The lack of a dedicated, cohesive space means vital conversations and connections are lost or diluted, leaving many without the support they need.

THE MRKH APP

 

That is why we are creating a dedicated digital home: an inclusive, secure app where individuals and charities can come together in one place. This purpose-built platform will provide verified resources, wellbeing tracking, access to events and opportunities to build supportive communities.

 

Anyone can become a community builder and grow their own networks within this impact-driven ecosystem. Charities and practitioners will also benefit from meaningful data to measure engagement, reach and impact.

 

To bring this vital space to life, we need funding to build an app designed by and for MRKHers. For too long, we have relied on platforms not created with all our needs in mind. It is time we finally have a space that truly belongs to us, a space where every one of us belongs.