World GO Day 2026

World GO Day 2026: the voice of ENGAGe

On the occasion of the @WorldGODay, the global day dedicated to gynaecological cancers, ACTO Italia met with Anne De Middelaer, Co-Chair of ENGAGe – European Network of Gynaecological Cancer Advocacy Groups. This European network unites and represents patient organizations committed to the field of gynaecological cancers.

Over the years, September 20th has become an increasingly significant and international milestone: a day to raise awareness, break the silence and stigma that still surround these diseases, and, above all, remind women facing gynaecological cancer that they are not alone.

With Anne, we discussed awareness, support, the role of patient associations, patient involvement, and the major disparities that still exist in access to diagnosis and care across different countries.

Because while raising awareness is essential, the next step is turning it into concrete action, quality care pathways, and a greater capacity to listen to women's voices.

• Anne, September 20th marks the return of World GO Day, which has now become a truly global event. As Co-Chair of ENGAGe, what is the single most important thing you want every woman to know today about gynecological cancers? And what concrete invitation would you extend to those reading this?

If there's one thing I want every woman to hear from me today, it's this: listen to your body, even when what it's telling you is vague. So many of the symptoms of gynecological cancers don't announce themselves loudly  — a bit more bloating than usual, a change in your cycle, a pressure or discomfort you can't quite name, something that just feels "off." It's so easy to explain these things away, to put them down to stress, to age, to "it's probably nothing." I want women to know that vague is still valid. You don't need a dramatic symptom to justify going to see a doctor.

That's also why regular check-ups matter so much to me personally — they're often what catches something before it has a chance to become louder and harder to treat. Please don't skip them, and please don't wait for a "good enough" reason to go in between appointments.

So my concrete invitation, woman to woman, is this: speak up. Say it out loud, even if it feels small, if you're worried you're not overreacting. There is no shame in your own body — not in bleeding, not in pain, not in symptoms that involve your sexuality. Don't let embarrassment be the reason you wait, and make sure your voice is heard.

• In recent years, one of the central themes of World GO Day has been the stigma that still surrounds gynecological cancers: the silence, the embarrassment of discussing certain symptoms, sexuality, and the consequences of the illness. Do you feel that addressing this simultaneously across so many different countries and cultures has genuinely helped change things? And where, in your opinion, is there still the longest way to go?

Yes, I do believe it has helped. This year's global campaign theme is actually "Support not stigma" —  we are campaigning around stigma a couple of years now - and that theme didn't come out of nowhere. It reflects years of patient organisations, in dozens of countries, insisting on the same message at the same time. When over 160 organised activities across 64 countries mark the same day, women will start hearing that their symptoms are a medical issue, not something private to be ashamed of, and we will keep repeating that message until it sinks in.

Where we still have the longest way to go is around sexuality and intimacy after treatment. Bleeding or pain is easier for people to talk about than what happens to a woman's sex life, her body image, or her relationship after a hysterectomy or pelvic radiotherapy. Vulvar and vaginal cancers in particular are still barely spoken about, even within patient communities. And in cultures — and there are many, including within Europe — where a woman's worth is tied to fertility or to not being ill, the silence is even harder to break. That's exactly why we need to keep pushing this message forward.

• Today, we want to take a step further: not just raising awareness, but making women tangibly feel that they are not alone. What does it truly mean to "support" a woman facing gynecological cancer? What can we do as individuals, family members, and friends, and what, instead, should patient associations be doing?

Real support is less about grand gestures and more about steady presence. It means listening without rushing to fix or minimise — not saying "at least it's treatable" or "you're so strong," or “ you look so good” but simply being there. It means noticing the practical load: who drives her to appointments, who looks after the children that day, who sits with her in the waiting room. And it means being able to sit with the harder conversations too — about fertility, about changes to her body, about intimacy — instead of changing the subject because it feels uncomfortable for us.

For family and friends, my honest answer is: show up, ask what she actually needs rather than assuming, and don't disappear once the treatment ends — recovery and the emotional aftermath often last far longer than people expect.

For patient associations, our job is to provide what individuals often can't: structured peer support with women who have genuinely been through it, clear and honest information, helplines, and a bridge to psychological and sexual health support that too often isn't offered as part of standard care. We should also be the ones pushing hospitals and policymakers to build that support into the care pathway itself, so it doesn't depend on whether a woman happens to find us.

• World GO Day, which began in Europe, has grown into an international movement that now reaches 64 countries across five continents. What does this growth mean to you? And above all, how can we ensure that greater awareness translates into greater equity in access to prevention, diagnosis, specialized centers, treatment, and support—especially in low-resource countries?

It means a huge amount not only to me, but also to every woman who has or is facing a gynecological cancer diagnosis, and when I see the impact, it actually makes me humble and very grateful. Here's a warmer version, like she's speaking directly to another woman she cares about:

To see this grow from something that started with just a few initiatives  into a movement marked in 64 countries. It tells me that women everywhere — no matter where they live — are carrying the same silence, and asking the same quiet questions. But I want to be honest with you: knowing about these cancers is not the same as being able to get help for them. We can't let one stand in for the other.

Raising awareness only means something if it's followed by real care on the ground. That means getting HPV vaccines and screening to the women who still don't have access to them. It means well-equipped hospitals reaching out to under-resourced ones, so no woman's chances depend on which hospital she happens to walk into. It means having someone by her side — a patient navigator — so she's never left to find her way through the system alone. And it means treatment that she can actually afford, not something priced out of her reach. At ENGAGe, we see it as our role to take what we learn from patients and patient experts here and use it to fight for the women who need it most elsewhere — and to make sure they have a seat at the table themselves, instead of being spoken about by others.

• ENGAGe works to ensure that the patient’s voice is increasingly present not only within advocacy groups but also in research, guidelines, care pathways, and institutional decision-making. What steps do we still need to take so that patient involvement becomes a truly integral part of the healthcare system rather than just an afterthought?

We need to move patient experts from being consulted occasionally to being present as standing members — on research steering committees, guideline panels, and health technology assessment bodies, from the start of a project, not brought in at the end to comment on something already decided.

That requires a few concrete things: sustainable, independent funding for patient organisations so our involvement isn't dependent on any single sponsor; training so patient advocates feel equipped to engage with clinical and regulatory language on equal footing; and — just as important — training for researchers and institutions in how to genuinely use patient input, not just collect it. And we need transparency: when we give feedback, we should be able to see what changed because of it. That accountability is what turns patient involvement from a box-ticking exercise into something that actually shapes care.

• If you could leave a single message on this day for women and their families, for physicians and researchers, and for institutions, what would it be?

To women and their families: please hear me when I say this — you are not alone. Speaking up about what's happening in your body is never an overreaction, it can genuinely save your life. Find your people, whoever they turn out to be: a patient organisation, a support group, or simply the friends and family who will sit with you and truly listen. You don't have to carry this by yourself.

To physicians and researchers: thank you for the work you do, and I ask this gently — please keep seeing your patients as experts in their own bodies and experiences. Bring us into the room earlier, while the guideline is still being written, not once it's already decided. We have so much to offer each other.

To institutions: a woman's chances shouldn't depend on the country she was born in or lives in — that's simply not fair, and we all know it. Our combined voices sound louder than ever, and all our awareness campaigns brought us this far — we are truly grateful for that. But now it's also your turn: please take action, in prevention, in equal access to treatment, in centralised expert centres, in follow-up programmes. We've done our part in making sure you heard us. Now please show us you were listening.

The words of Anne De Middelaer remind us that World GO Day is not just an awareness day.

Above all, it is a call to action.

As women, family members, doctors, researchers, associations, and institutions, we can all contribute—each in our own role—to creating an environment where no woman has to face gynecological cancer alone.

For ACTO Italia, this means continuing to work so that every woman can recognize her body's signals, receive a timely diagnosis, be guided toward appropriate pathways and expert centers, access the best treatment opportunities, and find a listening ear and support during and after the illness.

But it also means bringing the patient's voice more and more into the places where decisions are made: in research, in care pathways, and within institutions.

Therefore, on September 20th, we want to share a simple message: let's talk about gynecological cancers, let's support the women who face them, and let's turn awareness into change.