#Japan #Tokyo #Heart Disease #PPI #With Heart Project

Towards a Society Where Heart Disease is No Problem

The With Heart Project, organized by the non-profit PPECC, has aimed to create a society where it’s acceptable to live with heart disease. This journey has culminated in a five-year effort, and we are proud to announce the final reporting event set for December 5, 2025. This occasion not only marks a significant milestone but also provides an excellent opportunity to reflect on past collaborations and inform the public about upcoming challenges and prospects for those affected by heart disease.

Background of the Project

In Japan, the structure of patient support is often compartmentalized by disease. This segmentation complicates the identification of common challenges faced by individuals suffering from various heart-related conditions. Issues such as balancing treatment with education and employment, restrictions in lifestyle, and access to resources are prevalent among diverse patient groups. Yet, their voices remain dispersed, hindered in forming a cohesive front to address these shared challenges.

Moreover, local regulations limit the ability of life sciences companies to communicate directly with patients. The stringent advertising guidelines under the Pharmaceutical and Medical Device Act restrict informative engagement, further isolating patients from the support they need.

In contrast, countries like the UK and USA have made substantial strides in involving patients and citizens in healthcare discussions and decision-making processes, a model known as PPI (Patient and Public Involvement). Since the third Basic Plan for Cancer Control was launched in Japan in 2017, there has been increased emphasis on patient engagement in research and evaluation, consequently raising awareness about heart disease issues.

The With Heart Project aims to bridge the gap between the concerns of heart disease patients and the interests of stakeholders in the healthcare industry. By collecting and amplifying the voices of individuals living with heart conditions, this initiative fosters ongoing dialogue without the risk of infringing on the Pharmaceutical and Medical Device Act.

Event Overview

With Heart Project Final Report Meeting

• - Date: December 5, 2025, from 6:00 PM to 8:00 PM
• - Location: Vision Center Tokyo Yaesu, Tokyo
• - Format: Hybrid (1st part available online)
• - Registration Fee: Free (Registration required)

Participation Links

• - Tokyo Venue: Registration Form
• - Online: Zoom Registration

Main Collaborators:

This project brings together diverse organizations such as the Heart Valve Disease Network, Children with Heart Diseases Association, Heart Kids Japan, Marfan Association of Japan, and more, all dedicated to crafting a supportive environment for those affected by heart conditions.

Program Schedule

Part 1 (Online Broadcast)

• - 6:00 PM: Overview of the With Heart Project’s 5-year journey
• - 6:35 PM: Panel discussion with heart disease patients and partner companies
• - 7:00 PM: Closing remarks

Part 2 (In-Person Only)

• - 7:15 PM: Dialogue session for honest discussions among attendees
• - 7:45 PM: Reflections and closing
• - 7:50 PM: Networking time
• - 8:00 PM: Event concludes

The Core Vision of the With Heart Project

The With Heart Project aims to bring together those affected by heart disease — patients, family members, healthcare professionals, and industry leaders — to collaboratively explore actionable plans towards a society that says, “Living with heart disease is okay.” By fostering an environment where every stakeholder’s input is valued, we aspire to contribute to shaping the future of healthcare that is inclusive for all. The project, supported by prominent organizations including the Japan Circulation Society and the American Medical Device and IVD Industry Association, commenced in November 2020.

Invitation to Participate

“The With Heart Project's concluding event is particularly meaningful to me,” remarks Takeshi Shukunobe, the project director. “From initial hesitant conversations, we have developed smoother and more profound discussions, leading to mutual understanding among heart disease patients, companies, healthcare providers, and regulatory bodies. This path, spanning 5 years, has strengthened our collective efforts in promoting PPI within the domain of heart disease. I invite everyone to join us in this important dialogue and reflection on our journey.”

For more information, visit the With Heart Project’s official website: Project Home.