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 Inspire Speaker Series – Nurturing Patient Advocacy and Building Sustainable Patient Organisations

Watch this video to see a recording from our Inspire Advocacy Speaker Series, held by the Global Heart Hub on May 11, 2022.

Speaker: Jon Barrick, past President of Stroke Alliance for Europe (SAFE) and current SAFE Patient Voice Ambassador.

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Prioritising your Heart Health

Watch now to see a special recording: Prioritising your Heart Health ⚠️💔

Don’t miss this excellent panel discussion, including Dr Sarah Jarvis, members of the heart patient community, and Executive Director of Global Heart Hub, Neil Johnson, for a discussion on how to detect and communicate new or changing symptoms of cardiovascular conditions. Now, more than ever, it is important to seek timely medical help.

The Global Heart Hub is emphasising the necessity to put your heart health first, with support from the Boehringer Ingelheim/Lilly Alliance.

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – What can CVD patient advocates learn from the Rare Diseases community?

Join Dr Durhane Wong-Rieger for a conversation about what cardiovascular disease advocates can learn from the rare disease community. Dr Durhane Wong-Rieger is President and CEO of the Canadian Organization for Rare Disorders and Chair of the Canadian Heart Patient Alliance.

Explore with us:

  • Durhane’s perspective on why some patients and patient groups take action and engage in collective action while others do not in similar circumstances, and why these differences occur.
  • Why it is important for patients to be engaged in advocacy.
  • What the lessons might be for the cardiovascular community.

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Invisible Nation: Exposing the realities of ASCVD

More than 300 million people live with atherosclerotic cardiovascular disease (known by its medical abbreviation ASCVD) with another 2 billion at risk. An invisible disease which is the underlying cause of 85% of heart attack and stroke related deaths. Yet, despite the alarming numbers, ASCVD isn’t widely known and most people aren’t aware they are living with this largely invisible disease.

Watch-back this Facebook live event, held on December 7th, where we brought together leading thought leaders to discuss who is at risk and how we can expose an Invisible Nation of people living with ASCVD.

Our panel included:

  • Dr. Shaun Goodman, Associate Head, Division of Cardiology, Department of Medicine, St. Michael’s Hospital, Toronto, Canada;
  • Magdalena Daccord, CEO, The European FH Patient Network;
  • Neil Johnson, Executive Director, Global Heart Hub;
  • Moderated by Celina Gorre, CEO, WomenHeart.

Watch to hear how we can bring together the cardiovascular community to expose the realities of ASCVD – a silent, chronic disease – and the personal and social impact it has. By creating awareness around this major driver of heart attacks, strokes, and death, Invisible Nation intends to ignite conversation, inspire action, and activate systemic change to make the burden of unmanaged ASCVD un-ignorable. This event and the Invisible Nation program have been created in partnership with Novartis Pharma AG.

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – Fighting the #1 Killer of Women: Empowering Patients as Advocates

Watch this video to see a recording from our Inspire Advocacy Speaker Series, held by the Global Heart Hub on July 7, 2021.

Speakers:

  • Amy Friedrich-Karnik, VP Advocacy and Communications, WomenHeart
  • Cecily Foster, Postpartum Cardiomyopathy patient and WomenHeart Champion

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – Patients of the Future, Patient – Clinician Partnerships

Watch this video to see a recording from our Advocacy Development Program, held by the Global Heart Hub on April 13, 2021.

Speaker:

  • Leading advocate for patient engagement, Dave deBronkart, widely known as e-Patient Dave. Dave joined us for an inspiring discussion on ‘Patients of the Future, Patient – Clinician Partnerships.’

See presentation here.    Read additional Q&As here.

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – How to Communicate Using Digital Media

Watch this video to see a recording from our Advocacy Development Program, held by the Global Heart Hub on February 3, 2021.

Speaker:

  • Krista Neher, from Bootcamp Digital, to explore how digital and social media can be used effectively for patient advocacy.

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Heart Valve Disease: Working Together to Create a Better Patient Journey

Global Heart Hub’s Heart Valve Disease Patient Council has partnered with The Health Policy Partnership, an independent health policy research organisation, to develop a report aiming to raise stakeholder awareness of heart valve disease across Europe. Watch to hear from multidisciplinary contributors to the report sharing their perspectives on the importance of working together to create a better patient journey.

Inspire Speaker Series – Evolution of Patient Leadership

Watch this video to see a recording from our Advocacy Development Program, held by the Global Heart Hub on November 25, 2020.

Speaker:

  • Julie Drury

     

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – Having a Voice

Watch this video to see a recording from our Advocacy Development Program, held by the Global Heart Hub on October 29, 2020.

Speaker:

  • Prof. Derek Stewart, OBE

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – Advocating for Yourself

Watch this video to see a recording of the “Advocating for Yourself” event, held by the Global Heart Hub on August 26th, 2020.

Speaker:

  • Susan Campbell

Views and or comments expressed by participants during this recording are personal opinions and do not necessarily represent the views of the Global Heart Hub.

Inspire Speaker Series – Introduction to Advocacy for Patient Organisations

Watch this video to see a recording of the Introduction to Advocacy for Patient Organisations event, held by the Global Heart Hub on June 24th, 2020.

Speakers include:

  • Avril Easton, Advocacy Manager, Alzheimer Society of Ireland
  • Gay Mitchell, Former MEP, EU Parliament
  • Craig Dwyer, Digital Campaigns & Strategic Communications Consultant