The room was electric. Walking into the hall at the 4th Global NCD Alliance Forum in Kigali, Rwanda, we were surrounded by women from every corner of the globe — doctors, community organisers, youth advocates, leaders — all united by one mission: to confront one of the world’s deadliest yet most overlooked threats, noncommunicable diseases (NCDs).

For us representing the American Heart Association, it wasn’t just another conference session. It was a space where lived experience met leadership, and where the urgency to act was impossible to ignore.

In that moment, we thought about the women and girls whose stories are rarely told, and about the brilliant young leaders who, despite their determination, too often remain outside the rooms where health decisions are made. Gender norms, caregiving roles and systemic inequities keep their needs invisible, or nearly so, in data, research and policymaking. And yet, they are the ones living the realities our policies are meant to change.

NCDs affect everyone, but women bear a disproportionate burden. Globally, about two in three women die of NCDs, yet women still face gaps in diagnosis and treatment due to gender-specific risks and social inequalities. Many NCD risk factors, such as tobacco use, unhealthy eating and physical inactivity, begin early in life, and the early onset of chronic conditions such as type 2 diabetes is rising among youth worldwide. Despite this, youth voices remain underrepresented in decision-making spaces. Inclusion is not just important — it is essential.

Meaningful change doesn’t come from new policies or research alone. It happens when leadership emerges from within communities, when stories become strategies and when those most affected help set the agenda. That’s why the American Heart Association, alongside partners including the Taskforce on Women and NCDs, actively includes women, youth and people with lived experience not as spectators, but as decision-makers.

When it comes to NCDs, especially heart disease and stroke, women are under-represented, under-diagnosed and under-treated. Since 1979, the American Heart Association has collected sex- and gender-specific health data, recognising that credible, ethical health solutions must be tailored to women’s unique needs. Through the Go Red for Women campaign, the Association has raised awareness that heart disease is the leading cause of death for women globally — even though nearly half of women remain unaware of their risk. With initiatives such as Research Goes Red, the Association is actively closing the data gap by engaging women directly in scientific research and investing in solutions that reflect their lived realities.

Yet the leadership gap persists, which is one reason why NCDs remain the world’s leading cause of death, especially among women. When women and youth are excluded from leadership, solutions fail to reflect the realities they face. A caregiver might delay her own treatment to look after family. A young advocate might see the mental health crisis intertwined with NCDs but have no platform to raise the issue. Without representative leadership, these insights are lost.

The way forward is clear:

• Embed youth voices in decision-making at every policy level.
• Invest in women’s leadership through training, mentorship and platforms to influence policy.
• Elevate real stories to drive empathy and urgency among global decision-makers.

Every voice matters — but voices only have an impact if they’re heard. When global advocacy actively centres women and youth, as it did in Kigali and during the American Heart Association’s co-led Youth Pre-Conference, Advocacy Journey to the High-Level Meeting 2025, we create the conditions for real, lasting change. That’s how we close both the leadership gap and the NCD gap — by ensuring those most affected are also leading the charge toward a healthier, more equitable world.

Inclusion isn’t a box to check. It’s non-negotiable. The voices of women, youth and those with lived experience are not simply “nice to have,” they are an essential foundation for reshaping solutions to be effective and sustainable for all – now and in the future.