Global Heart Hub

With thanks to you, it's been an incredible year for Global Heart Hub and our work in uniting #cardiovascular patient organisations and advocates. From reaching 131 Affiliates around the globe, to our 4th Unite Summit, to our hugely successful awareness campaigns in  #heartfailure, #heartvalve disease and #cardiomyopathy - gaining over 145 million opportunities to see our campaign messages, the launch of our Manifesto for change – achieving early detection and diagnosis of CVD and much more, it has been a wonderful and motivating year. Huge thank you to all our patient organisation affiliates, patient advocates, partners and sponsors for supporting Global Heart Hub's work in advocating for the best possible outcomes for people living with cardiovascular disease. Thank you for being part of our global community and helping to strengthen the cardiovascular patient voice. We look forward to connecting with you in 2025 💜

This year Global Heart Hub's Heart Valve Disease awareness campaign was led by the Heart Valve Disease Patient Council of Global Heart Hub, with a message driven by supporters across 30 countries including: Austria, Brazil, Canada, China, France, Germany, Ireland, Israel, Italy, Japan, Mexico, Poland, Spain, The Netherlands, UK, US, and more. Together we achieved 63 million opportunities to see the #ListenToYourHeart message across the world. Together we are making a difference. Thank you for supporting Global Heart Hub's 2024 Heart Valve Disease Awareness Campaign. Continue to #ListenToYourHeart

At Global Heart Hub we are passionate about advocacy in action and so this year our Patient Community Development Executive Joanna Ten-Kate attended the Global Health: Advocacy and Diplomacy in Action course at the University of Geneva Summer Schools in July, where she deepened her understanding of global health policy, advocacy, and diplomacy. Understanding how to navigate complex policy ecosystems equips Global Heart Hub to better advocate for patient-centred policies and by learning how to engage with decision-making processes at institutions such as the World Health Organization, we can better position to amplify the patient voice and push forward sustainable solutions in global health advocacy.   Speaking about the course Joanna said, “I am excited to leverage these insights and skills in my role at Global Heart Hub, ensuring that the voices of patients affected by heart disease are not only heard but actively shape health policies”.   Well done Joanna and thank you for all your hard work.

Our Executive Director Neil Johnson spoke with MEP Maria Walsh in the #EuropeanParliament in Strasbourg as part of the European Alliance for Cardiovascular Health (EACH) campaign to put cardiovascular health on the agenda for the next parliament. Watch the interview 💜 #VoteCV #CVHealthForAll #CVD

At Global Heart Hub we strongly believe in the continuous training and up-skilling of our team, both to enhance their own skills and knowledge, but also to adapt to ever-changing needs of the patient community landscape.   This year Global Heart Hub Operations Manager David Kelly 💜 graduated from the EUPATI Patient Expert Training Programme as part of the 7th cohort of trainees. The Patient Expert training programme is centred around the medicines’ development process. It covers the entire lifecycle of medicines research and development (R&D), from design and execution of research projects and clinical trials to regulatory processes and Health Technology Assessment (HTA).   Speaking after the graduation ceremony in Madrid recently, David said he was “delighted to join such a well-respected and diverse range of patient experts and to putting his newly gained knowledge to work for the betterment of the cardiovascular patient community and in my day-to-day role with Global Heart Hub”.   Well done on this achievement David. We are confident the knowledge gained will be put to good use.

At the CVCT - Cardiovascular Clinical Trialists Forum, the important role of each stakeholder in #CVD #Healthcare is highlighted! Global Heart Hub is proud to be part of the HEU-EFS Project which focuses on developing a harmonized approach to early feasibility studies for medical devices in the EU. This project not only aims to improve health technology assessments but also emphasizes the importance of including patient voices in these processes. By all stakeholders working together we pave the way for more effective and inclusive healthcare solutions. It takes a village and inclusion of patient voices can drive innovation! #CVCT2024 #HealthcareReform #HEUEFS SDA Bocconi Edwards Lifesciences

The groundbreaking patient-led research initiative, Insights from Patients Living with Elevated Cholesterol (IPEC), has raised the bar for patient-centred research. With the experiences of individuals with elevated cholesterol at six major international scientific congresses and country-level events in 2024, IPEC is proving that integrating patient experiences is essential for advancing cardiovascular care. This achievement underscores the growing acceptance of patient-led insights as essential to driving meaningful change in health outcomes and provides a strong, evidence-based argument that true progress in cardiovascular health can only be achieved when the patient experience is part of the conversation. We are proud to lead this important dialogue alongside WomenHeart: The National Coalition for Women with Heart Disease, Instituto Lado a Lado pela Vida, hearts4heart, and the IPEC Steering Committee whose dedication has brought these insights to life. Together we are building a future where the patient voice is at the heart of research, care, and policy. ➡️ Dive into the full story and milestones in our website: https://lnkd.in/gm2AqrPn #PatientLedResearch #IPEC #CardiovascularHealth

We are at the 21st Global CVCT - Cardiovascular Clinical Trialists Forum in Washington DC, USA. The Forum is the largest global gathering of clinical trials key stakeholders! #CVCT assembles the most diverse group of stakeholders, who collectively cover the areas of: - trial rationale,  - design issues,  - trial conduct, - operational issues,  - statistical interpretation, - clinical meaning,  - approvability by major regulatory agencies,  - valuation by payers and Health Technology Agencies #HTA - translation into practice guidelines,  - implementation in real life by physicians. The 3 days event offers a packed programme of sessions starting from 7am till 7pm. The sessions last on average 2,5h and feature panels of 6 to 8 speakers, including a regulatory body representative, and industry (sponsor) representative and in most cases a patient expert. This year on the agenda topics close to our community #safety, #atherosclerosis, #triglycerides, #lipoproteina, coronary CT, as well as #women in clinical trials, paediatric trials, #AI and more. Also, this year a dedicated panel “The impact of Health Data and Digital Tools from clinical trials to results in treatments”, where for the first time FH Europe Foundation will be represented by Magdalena Daccord . A big shoutout to Penilla Gunther for her continuous efforts to bring the patient experience to this important table!

Great to catch up with so many #Patient #Advocates at the CVCT - Cardiovascular Clinical Trialists Conference in Washington this week. Congratulations to the organisers for inclusion of #patientperspective across all panel discussions. #PatientsIncluded #Stakeholder #Engagement Penilla Gunther Magdalena Daccord Celina Gorre WomenHeart: The National Coalition for Women with Heart Disease FH Europe Foundation Rhonda Monroe Steven Macari Phil Collis Juddson Rupp Mariëtte Verbakel @hcm