The Rarely Project & Mind Over MRKH

A little update on what we're building here and why!

There's been a lot happening behind the scenes recently, so we thought it was time for a proper update.

While Mind Over MRKH continues to grow and support the MRKH community, The Rarely Project is beginning to take shape around it. Both projects are rooted in lived experience, community and advocacy, so we're taking our time to build strong foundations before expanding further.

One thing we're particularly excited about is slowly bringing together a wider team of people who share our vision. Before we grow, however, we're focusing on the infrastructure needed to ensure everything we create is safe, sustainable and genuinely useful to the communities we serve.

Building Strong Foundations

A huge area of focus at the moment is quality, trust and governance.

We have recently started working with the Patient Information Forum (PIF) to begin the process of obtaining the PIF TICK accreditation across our resources.

This starts with our director, Ellamae, who recently attended her first meeting as part of the programme. Over time, this learning will be embedded across both The Rarely Project and Mind Over MRKH.

This is particularly important to us because whilst Rarely focuses on lived experience, storytelling and community, Mind Over MRKH shares a significant amount of information relating to anatomy, bodies, fertility and MRKH. We want to ensure that everything we produce is trustworthy, evidence-based and accessible.

Joining National Voices

We're also delighted to have become members of National Voices.

National Voices brings together organisations from across health and social care, helping ensure patient and lived experience perspectives are represented in wider policy discussions.

For us, this opens up opportunities to contribute to consultations and strategies that directly affect our communities, including women's health, fertility, mental health and patient experience.

MRKH and uterine factor infertility are often missing from these conversations, so having a route into wider discussions is something we're incredibly excited about.

Mind Over MRKH

Mind Over MRKH remains at our beating heart!

Since 2018, we've been creating community spaces, events and conversations that support people living with MRKH beyond the medical aspects of the condition, as well as strategising innovation for community spaces (a mobile app is still our biggest vision for MRKH work!)

We're currently planning our next MRKH community event, taking place in London on 29th August and we can't wait to bring the community together again.

Behind the scenes, work continues on the MRKH Magazine, alongside several exciting collaborations and future projects.

Collaborations and events

Recently, Ellamae delivered a talk at MRKH Stars exploring self-esteem confidence and the emotional impact of growing up with MRKH. It was a truly special event and we can't wait to support more events with talks from our own team, which includes several MRKH advocates and friends.

We're now preparing for MRKH Connect Live on 11th July, where we'll be delivering a joint session with a therapist exploring pleasure, intimacy and reclaiming confidence after diagnosis. It's a topic that isn't spoken about enough and one Ellamae and Kayte are really looking forward to exploring together.

Advocacy Beyond MRKH

Alongside this work, our founder, Ellamae continues to be heavily involved in wider fertility and reproductive advocacy.

She is a leading and founding member of Fight for Surrogacy, helping raise awareness of funding disparities and access barriers faced by people with uterine factor infertility and setting up a uterine factor infertility support group.

Earlier this year, Ellamae completed a half marathon in support of CALM (Campaign Against Living Miserably), raising awareness around suicide prevention and mental health.

Next up is the Three Peaks Challenge, where she will be raising money for Fertility Action and their work supporting people affected by fertility challenges across the UK.

Looking Ahead

We're still early in this journey.

The Rarely Project is growing carefully and intentionally, creating space for stories, advocacy, community and lived experience to sit alongside trusted information and meaningful change. We are building something truly special and can't wait to welcome people into our safe community soon.

As a CIC, we are proud of what we're building, so we will always work alongside charities, community groups, advocates and organisations already doing incredible work. Collaboration has always been at the heart of everything we do and always will be.

We are going to be kicking things off by sharing stories of rarely spoken conditions and planning events and peer support groups that brings different lived experiences into one space - so watch THIS space!

Want to share your story? Get in touch with us via rarelyproject@gmail.com

Thank you for being part of the journey so far.

We're only just getting started!