Dr Zanfina Ademi is a Professor of Health Economics and leads the Health Economics and Policy Evaluation Research (HEPER) Group at Monash University. Her research focuses on improving health equity by generating high-quality health economic evidence to support healthcare decision-making.
Her work spans prevention, population genomic screening, and disease management, including the development of new health metrics such as Productivity Adjusted Life Years (PALY). She has led funded research projects across Australia, the EU, the UK, and Switzerland, providing cost-effectiveness and return-on-investment analyses for healthcare funding decisions.
Professor Ademi serves on several national and international committees, including the Economics Sub-Committee (ESC) of Australia’s PBAC and the International Lp(a) Taskforce, contributing to global healthcare policy and economic evaluations. 

Nicola Bedlington was the first Executive Director and Secretary General of the European Patients Forum from 2006 to 2019. Nicola was also the founding Director of the European Disability Forum (1996 to 1999). Prior to this, she headed the NGO unit within HELIOS, a European Commission Action Programme promoting equal opportunities for disabled people (1991-1996). From 2004 to 2006, she led the Environment and Schools Initiatives Secretariat (ENSI), an international government-based network set up by OECD, focusing on Education for Sustainable Development. 
 
Nicola is based in Vienna, and has recently set up Millwater Partners, a consultancy company focused on health, engagement and sustainability. In this role, she has undertaken several projects in the field of cardiovascular health, including authoring the European Action Plan on Cardiovascular Health. She is also advising several global initiatives focused on meaningful patient engagement (Patient Focused Medicines Development (PFMD), From Testing to Targeted Treatment (FT3) and the Global Centre for Person-Centred Value-Based Healthcare. 
 
Nicola is the Senior Policy Advisor to the FH Europe Foundation, and supported the recent Campaign on FH Paediatric Screening, authoring the Prague Declaration on FH Paediatric Screening. She is the project lead for the Lp(a) preparatory phase. 

Matt Bolz-Johnson has worked at EURORDIS since 2014 as a patient advocate. Matt has over 15 years of experience working in the rare diseases field, specialising in the selection and approval of expert centres in the NHS, England and for the European Reference Networks used by the European Commission. He also has supported the development of clinical networks for rare diseases at a national, regional and international level, ensuring patient groups are active and are leaders in these networks.

Jenna (Nazhen Chen) holds a PhD in Engineering Management from the University of Hong Kong and a Master’s in Technical Economics and Management from Central University of Finance and Economics, Beijing, China. She began her career as a co-founder of Dr. Mums, an e-commerce startup focused on probiotics. In 2020, driven by her own diagnosis of heterozygous familial hypercholesterolemia (HeFH), she founded Homy FH China Patient Network, supporting over 1,000 patients with inherited lipid disorders such as HeFH, HoFH, Lp(a), and sitosterolemia. Her mission is to promote early diagnosis and effective treatment across mainland China. She further expanded her impact by founding Homy First Aid, a certified social enterprise dedicated to first aid training and AED public access, having trained nearly 10,000 people. Jenna actively volunteers in health education and advocates for stronger patient engagement, research collaboration, and policy development in lipid disorder management.

Magdalena Daccord has been Chief Executive of FH Europe Foundation since November 2019, leading its expansion from 25 to 32 organisations and broadening its scope to include inherited lipid conditions and Lp(a). She established Scientific and Policy Advisory Committees and an Industry Roundtable, and founded Stichting FH Europe in the Netherlands, transitioning the charity into an EU-registered non-profit. 
 Under her leadership, FH Europe Foundation applied for three EU grants (EU4Health, Erasmus, Horizon) and became a member of WHF, EPF, EURORDIS, and EACH, collaborating with EAS, IAS, EAS FHSC, and EAPC. 
Previously, she was Head of Operations for EMEA at DIA, overseeing regulatory, PV, and market access programs and leading patient engagement initiatives. With a background in biotech and pharma, she is dedicated to healthcare redesign, personalised prevention, and precision medicine. 
Originally from Poland, she lives in Switzerland and actively supports women’s leadership and health equity initiatives. 

Jenny has a background in leadership in the sports and corporate sectors and brings her experience in engagement of people, growth and strategy development as a co-founder and operational Chair of FH Australia
As someone who has lived experience of FH and who has been heavily engaged in the cascade testing of her family members for FH, Jenny is passionate about “lifting the lid” on inherited high cholesterol – both FH and elevated Lp(a) across Australia.  Creating awareness of these two conditions is in a priority action for FHA. 
Recognising the gaps in awareness, support of individuals and families living with inherited high cholesterol led to the launch of FH Australia at the beginning of 2024, a national support and advocacy organisation for those living with FH and Lp(a).

Professor Salvatore Di Somma is a Clinical cardiologist and Internist and former Professor of Internal Medicine at -University of Rome “La Sapienza”, Rome Italy, from 2000 until 2023; .From 2000 until 2016 Prof Di Somma has been Director of Department of Emergency Medicine, Sant’Andrea Hospital Rome, and  Director of the Postgraduate School of Emergency Medicine, University “La Sapienza”, Rome, Italy. and from 2017 until 2023 director of Community Health system and Telemedicine University Programme, Latina- Polo Pontino University of Rome Sapienza.
He is also visiting Professor at UCSD Health Centre UCSD USA and Expert Professor at the Department of Medicine Lund University Sweden.
Prof. Di Somma has published more than 300 papers in the field of   Cardiology, Internal Medicine and Emergency Medicine. He is Editor-in-Chief and board Member of many international medical Journals He is   Former President of GREAT Global Research on Acute Conditions Team, the Academic Research and Educational Organization www.greatnetwork.org/int/ gathering experts operating in the management of acute clinical conditions in the field of Cardiology in 78 countries Worldwide. Moreover, he is the President of the GREAT Network Italy.
He is also the founder of Great Health Science, a startup in Innovation in Healthy Ageing.
Moreover, he is the Chairman of the Scientific committee of the Italian Association of patients with Heart failure(AISC), member of ACCA ESC working group of Acute Heart Failure, Directive Council Member of Italian Association of Heart Failure (ITAHFA) and of World Academy of Emergency Medicine(WACEM).Prof Di Somma   is also a member of the Scientific board of Alisei: advanced science life.

Elsie Evans, known to her friends and family as Cindy, joined FHEF as the Ambassador Program Manager. She has been a teacher for 20 years. Elsie is an Assistant Headteacher working in a primary school that specialises in Special Educational Needs and Disabilities (SEND). As a Qualified Special Education teacher, she possesses extensive knowledge of adapting the curriculum and implementing effective teaching strategies to meet the unique needs of students with diverse learning abilities. Elsie loves to travel, so she says it has been difficult to balance treatment with personal growth. Elsie is also a person living with HoFH. 

Dr. Marius Geantă is a pioneer in personalised medicine and a leading voice in health policy and innovation. He is President and Co-Founder of the Centre for Innovation in Medicine, a research and policy-oriented civil society organization. He also serves as Co-Chair of the Scientific and Public Health Advisory Committee at FH Europe and Chair of the Working Group on Education and Curricula at ICPerMed. 
 
He is involved in pan-European healthcare projects, including DigiTwins Consortium, PECAN, ReThinkHPVaccination, and Uncan EU, focusing on personalised medicine, public health genomics, and digital health. As the coordinator of the “State of Innovation in Medicine” Annual Report, he also organises high-level policy events such as Science Meets Politicians and the Personalised Medicine Conference in Romania. 
 
With over 15 years of experience in health communication, he has been editor-in-chief and publisher of multiple medical journals and is a frequent media expert on health innovation, having given over 1,000 interviews, particularly during the COVID-19 pandemic. 

Lena-Rosa is an FH patient, having inherited the condition from her father’s side. She feels strongly encouraged to raise awareness about inherited lipid conditions such as familial hypercholesterolemia and is committed to advocating for them in a serious and meaningful way. Her goal is to combine the knowledge she has gained over the years through studying genetics and public health and to use it to make a real impact.

Madalina is a committed health advocate and patient ambassador for FH Europe, using her voice to raise awareness of familial hypercholesterolaemia (FH) and promote patient-centred healthcare across Europe. With lived experience as both a patient and a caregiver, she brings authenticity and urgency to her advocacy work. 
Professionally, she serves as a Public Affairs Director at DGA Group in Brussels, focused on health, having previously worked as a Policy Advisor in the European Parliament, where she contributed to the work of the BECA committee and other health-related files. Earlier in her career, she held a long-standing role at the Egyptian British Chamber of Commerce in London, focusing on international trade and policy.  
She was also actively involved in Eurosfat, Romania’s foremost European stakeholders’ forum, where she helped foster dialogue between civil society, policymakers, and the private sector on key EU health issues.

Gergely JAMBRIK is the founding partner of Jambrik Law Firm and board member of Heartily Hungary (the local member of FH Europe).  He joined Heartily Hungary’s FH Group in 2013 and was elected to the Board in 2020. 
 
He is a former Board Member of FH Europe and a founding Board Member of FH Europe Foundation. Selected FH-related activities: assisted to the establishment of FH Europe Foundation, contributions to the draft Global Call to Action, education workshops, patient advisory projects, also with corporate and NGO partners, incl. Association of Innovative Pharmaceutical Manufacturers. 
 
He has over 25 years’ experience in the field of commercial law and Intellectual Property / IT law, and also pursued PhD studies on electronic contracting in The Hague, NL. Before founding his own IP/IT boutique office, he was a senior associate and knowledge management lawyer at the international law firm Freshfields Bruckhaus Deringer. He specialises in data protection law, software, copyright, IT and e-commerce, trademarks, domain names. Member of the Legal Advisory Committee of the Hungarian Council of Internet Providers and the Hungarian Chapters of AIPPI and EFDPO.

Romana Jerković is a Croatian medical doctor, politician and Member of the European Parliament (MEP) since 2020, representing the Progressive Alliance of Socialists and Democrats (S&D). She holds a PhD in biomedical sciences from the University of Padua and is a university professor at the Faculty of Medicine, University of Rijeka. Jerković has an extensive career in public service, including her role as Deputy Mayor of Rijeka and three terms as a Member of the Croatian Parliament, where she focused on health, social affairs and gender equality. As an MEP, she serves as Vice-Chair of the Committee on Public Health (SANT). Her work revolves around strengthening EU action on cancer and cardiovascular health, while more broadly tackling health inequalities to ensure that all patients across the European Union have access to timely, effective and equitable care.

Prof. Joanna Lane PhD: Chairperson for FH European Foundation; Founder and Managing Director of Stichting HCN (Amsterdam); Professor at the Centre for Health & Technology, University of South-Eastern Norway; Co-Chair of the Advisory Board for the European Partnership for Transforming Health and Care Systems; Senior EU Adviser at Norway Health Tech; REGIO-CEI-AMI Senior Expert. 40 years of relevant experience working at the interface of policy, research and practice with the NHS until 2001, followed by private consultancy until 2007 and then non-profit work in the EU: EU-funded projects and assignments; securing funding for novel less invasive interventions in oncology, CVD and under-researched medical conditions; health adviser/mentor and evaluator. Special, Visiting and Honorary Professorships since 1999 and Lay Member of University Court at Edinburgh Napier University 2008-2011.

Chyrel Lichaa is a dedicated advocate for individuals living with Homozygous Familial Hypercholesterolaemia (HoFH). As a HoFH Patient Ambassador, she actively works to raise awareness about this rare genetic disorder, which causes extremely high levels of LDL cholesterol from birth. Her personal journey with HoFH has made her a passionate spokesperson, emphasising the importance of early diagnosis, effective treatment, and emotional well-being for patients. Chyrel is an active member of FH Europe Foundation and continues to contribute to the organisation's mission to empower HoFH patients and raise awareness on a global scale.

I am passionate about empowering individuals and communities through advocacy, education, and collaboration. As someone personally affected by elevated Lp(a), I am committed to raising awareness and improving access to care for those facing similar health challenges. As an active member of organisations like FH Europe, Stichting LEEFH, and the EPF Youth Group, I work to raise awareness and improve access to care for those affected by genetic lipid disorders and broader health challenges worldwide.
My professional background combines patient advocacy and public speaking, alongside my ongoing medical studies. Additionally, I actively apply my skills in patient advocacy and healthcare policy through various extracurricular roles and initiatives. Driven by empathy and a desire to make a positive impact, I strive to bridge gaps in healthcare understanding and support communities across the world.

Dr. Ingrid Klingman is a physician, specialising in General Medicine, Clinical Pharmacology and Pharmaceutical Medicine with over 30 years of experience in different senior medical, operational and managerial functions in the pharmaceutical industry, CROs and clinical trial sites with a focus on clinical trial design and management, ethical and regulatory aspects.
Since January 2003 she has her own pharmaceutical development and site management support consulting company.
Dr Klingmann is Chairman of the Board of the European Forum for Good Clinical Practice (EFGCP) and Trustee of FH Europe. Her broad professional background as a physician with experience in patient care, clinical development, site management, regulatory affairs, clinical research ethics, and patient engagement enables Dr Klingmann to bridge the gaps between the interests and skills of all different stakeholders in medicine development with the aim to develop new patient-relevant treatments more efficiently. Having been a founding member of EUPATI, the European Patients Academy on Therapeutic Innovation, she has been and is working on numerous activities to enable and facilitate patient involvement in medicines development in practical terms through patient and sponsor education and guidance development. Since 2023 she is Co-Chair of EU-X-CT, the multi-stakeholder initiative to enable cross-border access to clinical trials for patients and investigators in Europe. 
Dr Klingmann is currently also Vice-President of PharmaTrain Federation, the not-for-profit organisation focusing on global standardisation and improvement of post-graduate training in medicines development sciences and President of EUFEMED, the European Federation of Exploratory Medicines. She also teaches on different clinical research and regulatory affairs topics in diploma and master courses at the University of Bonn, Germany, the University of Basel, Switzerland, and the Université Libre de Bruxelles, Belgium.

Marko Korenjak is President of the European Liver Patient Association (ELPA), representing 39 liver patient associations from 29 countries across the WHO European Region and the Mediterranean Basin. He serves as a Civil Society Representative on the European Medicines Agency (EMA) Management Board and previously on its Pharmacovigilance Risk Assessment Committee (PRAC) and as co-chair of the Patient and Consumer Working Party (PCWP). Marko was part of DIA’s ACEMEA Advisory Council, the HERA Civil Society Advisory Forum, and the ECDC Advisory Forum. He contributes to the EU working group on hepatitis B and C and the WHO EURO committee on TB, HIV, and viral hepatitis. Holding three master’s degrees, his work focuses on patient advocacy in European healthcare policy. At ELPA, he leads 20 EU Horizon projects with over €200M in liver research. In 2017, The Economist named him among 18 global hepatitis leaders; in 2024, he received PFMD’s “Made with Patients” award.

Prof. Florian Kronenberg is a leading expert in genetic epidemiology, specialising in lipoprotein(a) and cardiovascular risk. He received his MD from the University of Innsbruck and trained in Medical Genetics under Gerd Utermann before working with Roger R. Williams and Steve Hunt at the University of Utah, USA. He later led the Genetic Epidemiology Research Unit at Helmholtz-Centre Munich before becoming Full Professor and Head of the Institute of Genetic Epidemiology at the Medical University of Innsbruck in 2004.

A Member of Academia Europaea, he has served on guideline and consensus initiatives (K/DOQI, KDIGO, EAS) and chaired the latest EAS Consensus Statement on Lp(a). He is also Chair of the International Task Force for Lp(a) and Deputy Editor-in-Chief of Atherosclerosis.

Dr Kronenberg has published roughly 575 papers, including 460 original articles, with an H-index of 107 (Scopus) and 124 (Google Scholar) and 66,000 citations.

Marie-Therese O’Donohue is a Lp(a) patient ambassador who recently discovered her elevated levels at the age of 38. Originally from Ireland, she resides in Switzerland and serves as the EMEA eCommerce Director at Bayer Consumer Health. She holds a Master of Science in International Marketing Practice from UCD Michael Smurfit School of Business. In addition to her professional pursuits, Marie-Therese is passionate about Irish dancing and female entrepreneurship, having actively supported women entrepreneurs through the Cherie Blair Foundation for Women in Business.

Professor Ivan Pećin is a specialist in internal medicine with sub-specialisations in endocrinology and diabetology. He graduated from the Zagreb School of Medicine in 2003 and later earned his M.Sc. in biology and PhD in biomedicine. His research focuses on dyslipidaemias, diabetes, and rare metabolic diseases. He is involved in national and international research programmes on arterial hypertension and dyslipidaemias. A recipient of multiple awards, he leads national initiatives for familial hypercholesterolaemia screening and is actively engaged in several professional societies, including serving as the vice president of the Croatian Atherosclerosis Society.

Vanessa Pott is the Head of Global Patient Engagement at Boehringer Ingelheim. Her team aims to strengthen collaboration and

partnerships with the patient community, systematically integrate patient and caregiver insights into the development of new

drugs and foster a patient-centric culture within the company. Until recently, she was also the global patient engagement lead

for Mental Health, Retinal Health & Emerging Areas. Before moving to Boehringer 2021, Vanessa specialised in patient insights

and advocacy at Merck. Prior to working in pharma, she helped to build out Edelman’s global speciality practice for

Health Systems, Health Policy and Patient Engagement. As the caregiver to a brother with a rare chromosomal condition and multiple complex medical needs, Vanessa is truly passionate about creating tangible impact for patients and their families, reducing health inequalities and advancing science.

Iva Prgomet is a pharmacy student passionate about improving public health and raising awareness of lipid disorders. After being diagnosed with heterozygous familial hypercholesterolemia (HeFH) in 2022, she became dedicated to advocating for better understanding, early diagnosis, and treatment of dyslipidaemia. In December 2023, she founded the Croatian Dyslipidaemia Patients Association to support patients, promote education, and encourage collaboration between healthcare professionals and the community. Since its founding, their association has organised the annual Run4FH event to raise awareness about familial hypercholesterolemia. She is also a strong advocate for healthy living and preventive healthcare. 

Scott Reavis lives in North Carolina, in the USA, and is a patient living with FCS. He is married with 3 boys, ages 20, 18, and 16.  He is a handyman/property manager with his oldest and youngest sons. Scott and Melanie are owners of Faith Preschool. In all his free time, he enjoys fishing and visiting the mountains of NC.

Marius Scheepers is living in a rare inherited condition. Since his diagnosis at age 2, he has felt the quiet shadow of mental health challenges woven through every chapter of his life. As a husband, father, and friend now in his early 50s, he is eager to share his deeply personal journey at the 2025 FH Europe Annual Network Meeting—because, as their tagline says, “There is no health without mental health.’’

Tobias Silberzahn is a trained biochemist and immunologist and has worked in the life sciences and healthcare space for more than 15 years. The focus areas of his work have been healthcare innovation and the digital transformation of healthcare.
Currently, Tobias is working as an independent advisor and board member, for example, as a Senior Fellow for BSt Gesundheit, a daughter organisation of the Bertelsmann Foundation, where the focus of his work is on trustworthy online health information. 
Tobias works with FH Europe Foundation as a Patient Ambassador and a member of the International Lipoprotein(a) Task Force, focusing on improving health and well-being for people affected by inherited lipid disorders. 
Tobias holds a PhD in immunology from King's College London and a diploma in biochemistry from Eberhard-Karls-Universität Tübingen (Germany).