FH Europe Foundation
Ambassador Programme

Improving Europe-wide awareness, understanding, and access to diagnosis and treatment of inherited lipid conditions.

Nothing about us without us!

Committed to building a world where no one is left behind.
Improving the lives of those living with Familial Hyperlipidaemias.
Empowering patient voice.
FH Europe certified patient ambassador programme

Who they are, what can they expect and how will it work

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Who are patient advocates?   

Patient ambassadors are individuals who have personal experience with a particular health condition, treatment, or healthcare system and who volunteer their time and efforts to advocate for others facing similar challenges.

They may include:
  • Patients: Individuals who have been diagnosed with a health condition and who are actively involved in advocating for themselves and others within the patient community.
  • Caregivers: Family members, friends, or loved ones who provide care and support for someone with a health condition and who advocate on behalf of the patient community.
  • Survivors: Individuals who have overcome a serious illness or health challenge and who use their experiences to inspire and support others facing similar situations.
  • Advocates: Individuals who are passionate about a particular health issue or cause and who work to raise awareness, promote research, and advocate for improved care and support for patients.
  • Healthcare Professionals: Doctors, nurses, social workers, and other healthcare professionals who are committed to patient-centred care and who actively engage with patients and their families to address their needs and concerns.
  • Community Leaders: Individuals who play leadership roles within patient advocacy organisations, support groups, or healthcare institutions and who work to empower and mobilise the patient community to advocate for positive change.
  • Public Figures: Celebrities, athletes, or other public figures who use their platform and influence to raise awareness about specific health issues, support patient advocacy efforts, and promote positive change within the healthcare system.

Overall, patient ambassadors come from diverse backgrounds and may have different motivations for getting involved in advocacy work. However, they are united by a shared commitment to making a difference in the lives of patients and their families, promoting patient-centred care, and advocating for improved access to quality healthcare for all. 


Patient Advocates

  • A patient advocate is someone who works to promote the interests, rights, and well-being of patients within the healthcare system.
  • Patient advocates typically focus on addressing broader systemic issues, such as healthcare policy, access to care, healthcare disparities, and patient rights.
  • They may engage in activities such as policy advocacy, legislative lobbying, public education campaigns, and grassroots organizing to effect change at the institutional, community, or policy level.
  • Patient advocates often work with advocacy organizations, patient support groups, healthcare institutions, and government agencies to advance patient-centered care and improve healthcare outcomes for all patients.


Patient Ambassadors

  • A patient ambassador is someone who shares their personal experiences and insights with others, often within a specific disease or health condition community.
  • Patient ambassadors typically focus on raising awareness, providing support, and offering guidance to individuals who are facing similar health challenges.
  • They may participate in activities such as public speaking engagements, media interviews, support group facilitation, and peer mentoring to share their stories, offer encouragement, and help others navigate their healthcare journey.
  • Patient ambassadors often work closely with healthcare providers, patient advocacy organizations, and community groups to amplify patient voices, raise awareness about specific health conditions, and promote patient empowerment and education.

Certified
Patient Ambassador

  • Certified patient ambassadors are essential advocates for individuals with inherited lipid disorders (this in particular refers to the main 4 conditions we advocate for, namely HeFH, HoFH, elevated Lp(a) or FCS )
  • They play a crucial role in raising awareness, providing support, empowering patients and their caregivers/family members, advocating for access to care, and influencing policy and research efforts aimed at improving outcomes/quality of life for individuals with familial lipid disorders.
  • Their voices and experiences are essential in driving positive change and ensuring that the community receives the attention and resources it deserves, improving outcomes for individuals affected by these genetic conditions.
  • They are uniquely placed to address issues of unmet needs, quality of life and the equality and equity. Their presence is critical to either contribute to or drive innovation. 
In summary, while both patient advocates and patient ambassadors work to support and empower patients, patient advocates tend to focus on broader systemic issues and policy advocacy, while patient ambassadors focus on sharing personal experiences, raising awareness, and providing support within specific patient communities.

Our Advisors 

We are delighted to introduce the members of our Advisory Group. 
Our program focuses on Familial Hyperlipidaemias and was developed with input from a diverse group of experts. They are essential members of the Advisory Group and provide advice, enhancing the Certified Patient Ambassador Programme.

Our Faculty

Our team of highly skilled faculty members, with their diverse backgrounds, are equipped to provide patient advocates with the latest information needed to effectively engage with multi-stakeholders and make a positive impact on the lives of individuals with Familial Hyperlipidaemias. We take pride in our expertise and unwavering commitment to delivering excellence.

Prof Zanfina Ademi

Professor of Health Economics, Monash University, Australia; Visiting Professor, University of Eastern Finland, Finland
The Professor of Health Economics and leads the Health Economics and Policy Evaluation Research (HEPER) Group at Monash University, Australia. Additionally, she is a visiting Professor at the University of Eastern Finland, Finland. She is actively involved in various national and international committees and international task forces, including the Economics Sub-Committee (ESC) of Australia’s Pharmaceutical Benefits Advisory Committee (PBAC) and the Lp(a) International Task Force.

Dr Fotios Barkas

Faculty of Medicine, School of Health Sciences, University of Ioannina, Greece Research Associate, ICCP, Imperial College London
An esteemed Internal Medicine Physician at the Outpatient Lipid Clinic, situated within the University Hospital of Ioannina - Greece's largest Lipid Clinic. In addition to his clinical work, Dr. Barkas has taken up the position of Assistant Professor of Internal Medicine at the University of loannina's Faculty of Medicine and research associate at the Imperial Centre for Cardiovascular Disease Prevention, Imperial College London. 

Mrs Nicola Bedlington

Senior Policy Advisor to FH Europe Foundation and a special advisor with EPF; Co-Founder Millwater partners. 
A Senior Policy Advisor for FH Europe Foundation and a special advisor with EPF. She co-led EUPATI and PARADIGM and is a founding board member of PFMD. Her expertise in patient engagement has earned her the reputation of a trusted advisor for global organisations. She also co-founded Millwater Partners, a consultancy specialising in health, engagement, and sustainability.

Dr Julia Brandts

Department of Internal Medicine, University Hospital Aachen, Imperial Centre for Cardiovascular Disease Prevention (ICCP), Imperial College London
A resident in cardiology at the University Hospital Aachen and an honorary research associate at the Imperial Centre for Cardiovascular Disease Prevention at the School of Public Health, Imperial College London. Dr. Brandts's research interests are mainly focused on evaluating cardiovascular disease prevention strategies epidemiologically, exploring new lipid-lowering therapies, and managing long-term complications such as heart failure.

Dr Marius Geantă

Centre for Innovation in Medicine, FH Europe Foundation, Romania
The President and Co-Founder of the Center for Innovation in Medicine, a non-governmental organisation based in Bucharest, Romania, focused on innovation in the healthcare sector. The aim of the Center for Innovation in Medicine is to shorten the time between the emergence of innovations in the medical sector and their application so that they can benefit patients both in Romania and elsewhere.

Dr Samuel Gidding 

Pediatric cardiology specialist, FH Europe Foundation Trustee, USA
A pediatric preventive cardiologist, professor of Genomic Health at Geisinger, and trustee of FH Europe. Since retiring from clinical practice, his professional activities have focused on advocacy, and research related to hereditary dyslipidemias, particularly familial hypercholesterolemia. He is an author or co-author on many important scientific statements and guidelines related to familial hypercholesterolemia and has been active in improving screening in childhood.  

Ed Harding 

The Health Policy Partnership
In the last 10 years Ed has led many cardiovascular policy projects and campaigns at national, European and Global level, working alongside leading patient and clinical experts. This has resulted in many high-level position papers and peer-reviewed articles which have helped to drive changes in government policies and also to guide the advocacy community towards its goals. He is deeply interested in accelerating change in our health care systems to deliver cardiovascular prevention and disease management at scale, and he is particularly active in heart failure, cholesterol, cardiomyopathy, rare cardiac conditions and heart valve disease. 

Prof Steve Humphries

Emeritus BHF Professor Cardiovascular Genetics, Institute Cardiovascular Science, University College London
A world-renowned expert in cardiovascular genetics, a field in which he has worked for over 40 years.   He worked at University College London from 1991, where he was the British Heart Foundation Professor of Cardiovascular Genetics, retiring in September 2015 and is the BHF UCL Emeritus Professor of Cardiovascular Genetics. He directed a major research programme to develop and implement molecular strategies to study the causes and clinical and psychological consequences of Familial Hypercholesterolaemia (FH). 

Neil Johnson

Founder and Executive Director, Global Heart Hub
Formerly Chief Executive of the Irish Heart & Stroke non-profit organization, Croí (www.croi.ie) from 1992–2023 and the Irish National Institute for Prevention and Cardiovascular Health (www.nipc.ie) from 2014–2023. He has over 30 years leadership, management and development experience in the ‘not-for-profit’ sector in the field of cardiovascular health – working across service development; prevention, rehabilitation; education and training; research; patient engagement and patient advocacy. He is a founder of Ireland’s first Heart & Stroke Centre dedicated to cardiovascular health and wellbeing which has been accredited by the European Society of Cardiology as a European Centre of Excellence in CVD prevention. 

Prof Albert Wiegman

Medical Specialist, ACS, AGEM, Research Associate, Paediatrics Amsterdam UMC
A distinguished pediatrician at Amsterdam UMC. He specialized in pediatric cardiology and treated patients in the pediatric-lipid department for three decades. He has conducted extensive research on treating Familial Hypercholesterolemia in children and has published over a hundred articles in international journals. His exceptional work has earned him an appointment as an associate professor and principal investigator in March 2020. He has provided care to over 4,000 children with inherited dyslipidemia, and his dedication to his patients and research is truly admirable.
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What makes us different

In partnership with our Ambassadors we amplify the patient voice, getting it incorporated in every part of the care journey.

'I have found my voice when I joined an amazing group of patients who are willing to talk about their condition and find that we are not alone, there are others like us'
If you are interested in joining our team as an ambassador or faculty member please contact us for more information.

Want to get involved?

Join us and help us find and support those living with Familial Hyperlipidaemias.
Thank you!
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