Patients voice set to grow Luigi Mazzei Country & Market Access Manager, Italy Michael George Communication Director, EMEACLA (with Miyoshi Asaoka Director, THV, Marketing Development, Japan)

Overcoming the barriers to patient access Non-chronic disease Poor disease awareness Ageing population No patient advocacy

Primary objectives and targets Patients, “Advocacy” and online community Spread knowledge and raise awareness Facilitate early diagnosis and increase recognition of the pathology Provide a clear and effective treatment for all Right treatment, right patient at right time. Improve patients’ quality of life. Policy makers and political stakeholders Trade and consumer media

Cuore Italia – How we did it? Support Kick-off EW Media Partner Cuore Italia Heart Valve Voice Steering Committee Scientific Board Action Plan Senior Italia IMPLEMENT ADVICE CREATE Select the partners Support creation of a fast-deployment organization Leverage from existing capillary advocacy Impact fast Establish independent trust Provide Scientific sound Agree on a plan

Cuore Italia early results 4.575 likes 2.500 in the first 2 months of activity Per le timelines io userei un diagramma di Gantt o una linea del tempo per il periodo 2016-2018 (medio termine). 1 Press conference 2 National events 2 Regional events

Open issues European Vision Transparency Science Independency Funding

Patient Advocacy Pieces Accurate Information about heart valve diseases Infrastructure of activities Vehicles of information People in need of right information at right time Symptoms Diagnosis Treatment Policy/ Health system Physician groups Patient-physician groups Patient groups Mass media Social media Public events Public interest groups Patients and families without right diagnosis or treatments Potential patients Considering to convey accurate information about heart valve disease to the people in need at right time, we need to expand the pool of players at each phase. In Italy, Cuore Italia broadened the band of “infrastructure of patient advocacy” by filling a previously missing part as patient-physician group. In Japan, Japan Heart Foundation has a potential to play the role. The non-profit organization founded by a physician group has provided the online counseling service for a long time. It may be able to strengthen its connection with patients by enhancing its online counseling service. At the next piece, the band of “Vehicles”, Italian team partners with “Senior Italia”, a strong public interest group aiming to protect rights and to improve the quality of life of senior people. We don’t have such a strong public interest groups for seniors in Japan. Instead, “Japan Federation of Senior Citizen’s Clubs” may become a hub to deliver the information to about 103,000 local senior club. While specific situation in each market could be different, a framework of patient advocacy conveyer may be applied to any environment.