ACE 2026: Our Experience, Our People, Our Journey đź’›
More than an exhibition. A meaningful opportunity for patient voices to be part of an international medical conversation.
On 24 and 25 October 2026, E for Endometriosis had the privilege of participating in the 14th Asian Congress on Endometriosis (ACE 2026), held at Pan Pacific Singapore.
For those unfamiliar with ACE, this was not your usual public awareness event or community health exhibition. And that is precisely why being there meant so much to us.
What is ACE 2026?
The Asian Congress on Endometriosis is an international medical and scientific congress that brings together gynaecologists, surgeons, researchers, nurses, allied healthcare professionals and industry representatives to exchange knowledge and advance the understanding and management of endometriosis and adenomyosis.
ACE 2026 was held in Singapore, with the Asian Society of Endometriosis and Adenomyosis (ASEA) and the Obstetrical & Gynaecological Society of Singapore (OGSS) playing key organising roles.
Under the theme "Changing the Narrative: A New Dawn for Endometriosis and Adenomyosis,"Â the congress provided a platform for discussions surrounding medical research, diagnosis, surgical advancements, fertility, treatment approaches and improvements in patient care.
Unlike public health exhibitions, which generally aim to introduce health conditions and encourage awareness, this was a specialist medical congress attended by people already familiar with the clinical and scientific aspects of these diseases.
In simpler terms, many of the people attending ACE 2026 were the very professionals involved in researching, diagnosing, treating and caring for patients with endometriosis and adenomyosis.
So, what was a small, volunteer-led patient advocacy movement like E for Endometriosis doing there?
Why Our Presence Was Different
At our usual public awareness events, much of our work revolves around helping people recognise the signs and symptoms of endometriosis and adenomyosis, understand when to seek medical attention and learn about the support available.
But at ACE 2026, our approach was different.
We were not there to explain endometriosis to the experts. We were there to share what patients experience beyond what medical knowledge and clinical findings can tell us.
Because there is a difference between understanding a disease medically and understanding what it means to live with it.
A healthcare professional may understand the clinical presentation of endometriosis, but what about the patient who spends years trying to obtain a diagnosis?
What about the financial consequences of repeated consultations, investigations and treatment?
The woman who continues working through debilitating symptoms because she cannot afford to lose her income?
Or the patient who finally receives a diagnosis but continues struggling to navigate the different services needed to manage her condition?
These are some of the realities that may not always be apparent during a medical consultation.
For ACE 2026, we prepared materials highlighting eight gaps in endometriosis care from the patient perspective. These included diagnostic delays, financial barriers, the need for multidisciplinary care, difficulties navigating specialist services, the lack of comprehensive national data and questions surrounding broader national responsibility for these conditions.
We also shared information about our patient support and educational initiatives, alongside an ongoing research project exploring endometriosis and neurodivergence.
Our intention was not to tell medical professionals how to practise medicine. It was to contribute something different to the conversation.
Their expertise is in medicine, science and research. Ours comes from lived experiences, community engagement and understanding the challenges patients continue to encounter.
We believe both perspectives have value, and that meaningful improvements in healthcare require opportunities for them to come together.
A Small Booth, but a Significant Milestone
Among exhibitors representing pharmaceutical companies, medical technologies, healthcare providers and other industry organisations, E for Endometriosis was the only patient advocacy booth within the exhibition area.
We were not promoting a medical product or commercial service.
We were there representing a patient community.
And as a standalone, volunteer-led movement without the resources or institutional backing of larger organisations, simply having the opportunity to participate in a specialist congress of this nature was significant.
Our exhibition space was modest. Within that space, we displayed our awareness materials, educational resources, research information and a glimpse into the work our movement has been doing over the years.
It may have looked like a small exhibition setup to others. But behind it were years of advocacy, countless conversations, volunteer contributions and lived experiences that shaped why we started E for Endometriosis in the first place.
We are particularly grateful to OGSS for supporting our participation by absorbing the exhibition and meeting package costs, making it possible for our movement to be represented at the congress.
Our heartfelt appreciation goes to OGSS President Dr Serene Thain, ACE 2026 Congress Chairman Professor Fong Yoke Fai, Ms Janet and the organising team for the opportunity and support extended to us.
For an independent patient-led movement, this was not something we took lightly. It was an opportunity to bring patient experiences into a professional space where discussions about endometriosis and adenomyosis care were already taking place.
And that meant a great deal to us.
The People and Conversations That Made It Meaningful
Over the two days, we had the opportunity to meet and interact with healthcare professionals, researchers, industry representatives, delegates and individuals from different backgrounds.
Some stopped by out of curiosity. Others wanted to understand more about our movement, the work we do or the patients we represent. There were conversations about research, patient experiences, collaboration and the realities of living with endometriosis and adenomyosis.
And then there were those who simply came by to say hello and offer encouragement. We appreciated every encounter. Because meaningful engagement does not always begin with a formal meeting or a major initiative.
Sometimes, it begins with someone stopping by a small booth, listening to a different perspective and recognising that there may be more to a patient's experience than what is captured in a medical report.
Our participation was also made possible by our volunteers, who generously contributed their time, helped prepare our materials and took turns representing E for Endometriosis throughout the congress.
As a patient-led movement, many of our volunteers have their own health challenges, work commitments and personal responsibilities. Their willingness to contribute to something beyond themselves is something I remain deeply grateful for.
Our ACE 2026 Experience, Shared in Three Parts
There were simply too many meaningful moments to capture in one social media post.
We have therefore documented our experience through three Instagram recaps, each highlighting a different aspect of our participation.
We invite you to explore them below.
đź’› Part 1: The Booth and the People
A glimpse into our little exhibition space, the preparations behind it and the people who helped bring our patient advocacy presence to ACE 2026.
Behind what may have appeared to be a simple booth was a collective effort made possible by volunteers who believed in the importance of being there.
đź’› Part 2: The People Who Made Space for Us
Our second recap is dedicated to those who welcomed, supported and encouraged our participation.
From the organisers and healthcare professionals to our volunteers and supporters, we wanted to acknowledge the people who helped make this opportunity possible.
Because being given a space to participate and contribute can mean more than people may realise, especially for a small patient-led movement.
đź’› Part 3: The Experience
Our final recap reflects on the conversations, encounters and connections that made ACE 2026 memorable.
Beyond the exhibition space were individuals from different disciplines and experiences, coming together through a shared interest in improving endometriosis and adenomyosis care.
Each encounter reminded us of the importance of remaining open to learning from one another.
What This Experience Meant to Us
Looking back, I think what stays with me most is not simply that E for Endometriosis participated in an international medical congress.
It is what that opportunity represented.
We started as patients trying to understand our own experiences, seeking answers, finding support in one another and hoping that perhaps the journey could be a little easier for those who came after us. We did not begin with a large organisation behind us, extensive resources or institutional support. What we had were lived experiences, determination and people who believed that these conversations mattered.
And years later, here we were, participating in a medical congress alongside individuals whose work contributes to the advancement of endometriosis and adenomyosis care.
Of course, being present at a medical congress does not automatically translate into improvements in healthcare practices, research priorities or policies. There is still much work to be done. But it allows patient perspectives to enter conversations that might otherwise take place without us.
It allows researchers to hear experiences that may raise new questions.
It allows healthcare professionals to better understand the challenges patients face outside clinical settings.
And it creates opportunities for relationships and collaborations that may contribute to meaningful progress over time.
Patient involvement should not be about being present simply for the sake of representation. It should be about having opportunities to contribute something meaningful.
That has always been important to us.
Moving Forward, Together
ACE 2026 may have concluded, but the conversations and connections we made will continue to stay with us.
We remain hopeful that more opportunities will emerge for meaningful patient involvement in medical education, research, healthcare engagement and discussions about improving care. Not because patients have all the answers. But because our experiences are an important part of understanding the questions that still need to be asked.
To everyone who visited our booth, shared a conversation, offered encouragement or supported us behind the scenes, thank you.
To the organisers who made space for our patient-led movement, thank you for recognising the value of having patient perspectives represented.
And to our volunteers, thank you for continuing to believe in what we do and for generously giving your time, energy and hearts to this movement.
We hope our three-part recap offers a little glimpse into why ACE 2026 was such a meaningful milestone for E for Endometriosis.
It was never about how big our booth was, or how many people stopped by. It was about having a place in conversations where patient voices deserve to be heard.
And for that, we are truly grateful.
Our journey continues, one conversation, one connection and one step at a time.
It's a wrap! đź’›
Comments