Why our Innovative MRKH App is Essential
- The MRKH App
- Jun 10, 2025
- 3 min read
The MRKH Community is vibrant, full of stories and support but we are scattered, disjointed and not working as a global eco-system (as much as we truly are global friends!). It's time for us to collectively bloom, build and belong. And here is born, the MRKH App.
We are 1 in 5000 and we are stronger together. That is why this brain-child, the MRKH App project, must come to life.
Let's delve into some real studies!
A 2024 study analysing an online forum for women and people with Mayer‑Rokitansky‑Küster‑Hauser syndrome (MRKH), a congenital absence or underdevelopment of the uterus and upper vagina, uncovered deep emotional, informational and social needs that remain unmet. We deserve innovation. This App deserves funding!
The key insights of this study solidify to us that our App is the way forward for our whole community. We can serve individuals but also the charities already doing the work.
1. Immediate Emotional Support After Diagnosis
Insight: Diagnosis typically occurs in adolescence, during a vulnerable developmental stage. It brings shock, grief, and identity confusion
App Solution: A private, modern, on-demand space with peer chats, access to the friendship finder, coping exercises and trauma-informed guidance could significantly reduce isolation and distress at the moment it matters most.
2. Streamlining Medical Interactions
Insight: Forum posts revealed frustration with fragmented medical care, lack of coordinated support, inconsistent information and feeling unheard .
App Solution: An app offers one space for MRKH, with the ability to find resources, self-care tools and friends easily along with seamless access to multiple charities and verified information.
3. Building a Stronger Peer Community
Insight: Women report social disconnection, difficulty discussing sensitive topics and unmet needs translating to anxiety and loneliness
App Solution: Private peer support circles, ability to find meaningful friendships with advanced filters, verified and trained mentorship pairing, a real sense of belonging.
4. Access to Tailored Education
Insight: Many participants expressed a desire for accessible, reliable information, specific to MRKH’s medical, psychological, sexual and fertility aspects
App Solution: A modular learning hub featuring:
Clinician-reviewed articles and videos
Q&A with experts
Age-appropriate content
Verified workshops
5. Holistic & Multidisciplinary Care Coordination
Insight: The study stressed that MRKH care needs a person-centered, multidisciplinary approach responding to both physical and psychosocial challenges
App Solution:
Integrates emotional well-being (mood trackers, stress relief tools)
Events management and building - empowering community building
Access to self-development tools (self esteem workshops and courses)
Access to skill-share functions to flourish as a community
Empowers users to track symptoms, mental health and therapy progress
Directory of recommended support built by users globally.
The voices from this study and many more are clear: those with MRKH, including our founder, crave emotional validation, medical confidence, peer solidarity and customised education. A thoughtfully built MRKH app can knit these essential supports into a seamless, user-first experience, exactly when they need it most.
If you're passionate about transforming MRKH support, consider collaborating on developing this app. Together, we can translate research-backed needs into real-world impact! Let's do this!
Di Mattei VE, Taranto P, Perego G, Caneva M, Parma M, Fontana E, Candiani M, Montali L. Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum. Psychol Health. 2024 Aug 12:1-23. doi: 10.1080/08870446.2024.2390647. Epub ahead of print. PMID: 39135440.
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