Global Heart Hub and EngageMinds HUB Launch Report to Transform Care for Women with Heart Valve Disease

September 1, 2025

Global Heart Hub, in collaboration with its knowledge partner EngageMinds HUB at Università Cattolica del Sacro Cuore, today launches Shaping the Future for Women with Heart Valve Disease, an international consensus report aimed at closing critical gaps in awareness, detection, diagnosis, and care for women living with heart valve disease (HVD).

Drawing on insights from patients, clinicians, researchers, and industry partners across 13 countries, the report presents six actionable recommendations to improve the outcomes for women with HVD throughout the entire patient journey, from inclusion of more women in research to earlier access to diagnosis and personalised treatment.

Reflecting on the roundtable meeting, Prof. Guendalina Graffigna, Director of EngageMinds Hub, said: “There is a strong passion and urgency among the people we interviewed and attended this meeting to address HVD in women, yet its impact remains underestimated by policymakers, care systems, and even patients. We need collective action to improve their care pathways.”

Speaking about the report, Neil Johnson, Executive Director of Global Heart Hub, said: “For too long, women with heart valve disease have been invisible in the data and underserved in health services. This report is both a call to action and a roadmap for change. By working together across borders and disciplines, we can ensure women’s voices are heard, their needs are met, and their outcomes are improved.”

Heart valve disease is a common health condition worldwide, being recognised as the next cardiac epidemic, in part related to the increasing ageing population. Yet, as the report highlights, women are frequently diagnosed late, misdiagnosed, or excluded from critical clinical trials. The recommendations set out in the roadmap address these gaps head-on, urging global and local action from patient advocates, the clinical community, policymakers and healthcare systems.

The consensus was shaped through a multi-stakeholder roundtable, where the resulting report offers a comprehensive analysis of the sex- and gender-based barriers in the awareness, detection, diagnosis, treatment, and follow-up of HVD in women, ensuring that lived experience is embedded in every recommendation.

Jacqueline Lewis, who lives with heart valve disease, co-chaired the international specialists’ multidisciplinary roundtable and contributed to the report, said: “I know firsthand how critical it is that women’s voices and experiences are truly heard. Far too often, symptoms like breathlessness, fatigue, or dizziness are dismissed or misattributed, especially when reported by women. By embedding patient experience into clinical conversations and system change, we have the opportunity to improve early detection and diagnosis, ensure equitable treatment, and support women throughout their lives”.

With practical recommendations for stakeholders at every level, from patients and healthcare professionals to policymakers and industry partners, the report serves as both a roadmap and a wake-up call for action. It calls for urgent, coordinated action to correct systemic inequities and improve outcomes for women with HVD globally.

Exposing the gender-specific challenges faced by women living with heart valve disease Prof Marta Sitges, Director of the Cardiovascular Institute at Hospital Clínic, University of Barcelona, who also co-chaired the roundtable and contributed to the report, added: “For too long, sex and gender differences in HVD have been overlooked in both research and clinical practice. Female patients remain underrepresented in clinical trials, and diagnostic criteria and guidelines continue to be based largely on male-centric data. It is time to translate data into action. As clinicians, we have a responsibility to champion these changes because evidence-based, gender-responsive care is not optional, it is essential”.

The report’s six priority actions are:

  1. Include more women in heart valve disease research.
  2. Develop comprehensive educational materials for women and their families.
  3. Implement targeted educational programmes for healthcare professionals.
  4. Organise screening campaigns in high-risk populations.
  5. Expand access to detection and diagnostic technologies.
  6. Promote longitudinal, person-centred care for women with HVD.

The impact of these coordinated efforts can reduce healthcare costs through effective preventive actions, lower morbidity and mortality rates, and guide future investments and policies to promote early diagnosis, treatment, and healthier and better lives for women with HVD worldwide.

The authors of the report hope to drive change and shape more equitable cardiovascular care, ensuring women with HVD are no longer overlooked but are instead supported, informed, and empowered at every step of their journey.

The full report Shaping the Future for Women with Heart Valve Disease, is available here.

For further information or to speak to anyone mentioned in the release, please contact: Karen McGarty, Senior Communications Specialist at karenm@globalhearthub.org

Global Heart Hub is the first global non-profit organisation established to provide a voice for those living with or affected by cardiovascular disease. We are an alliance of heart patient organisations, aiming to create a unified global voice for those living with or affected by heart disease.

Our aim is to unite patient groups from around the world under the umbrella of the Global Heart Hub. Our combined mission is to raise awareness of heart disease and the challenges it presents in everyday life. The Global Heart Hub is a platform for heart patient organisations to share their views, learn from each other’s best practice, unite on common advocacy goals, and share resources. We aim to increase awareness and understanding of the many heart conditions that exist, improve patient outcomes, enhance quality of life, and optimise longevity and healthy aging.

For more information, visit: globalhearthub.org

About EngageMinds HUB

EngageMinds HUB is the first Italian multidisciplinary research centre dedicated to the study and promotion of engagement, i.e. the active involvement of people in health behaviour.

It is an international scientific reference point for the design and implementation of initiatives aimed at monitoring and promoting the engagement of the patient and the actors involved in the health system: health professionals working as caregivers, and all the stakeholders involved in the research and provision of treatments, drugs and health services.

The research, training and consulting activities promoted by EngageMinds HUB also rely on the collaboration of professors and researchers from different scientific fields (psychology; agriculture, food and environmental sciences; economics; medicine; law; sociology; banking sciences) at national and international level.

For more information, visit: engagemindshub.com