Annie Costelloe is Head of Patient Community Engagement and a member of the senior leadership team at Croí Heart & Stroke Charity. She has nearly 20 years of experience in cardiology-focused patient support and advocacy. Over her 12-year tenure with Croí, Annie has worked closely with patients, families, and communities to keep their needs and perspectives central to the healthcare journey. Working alongside Croí’s multidisciplinary health team, she has played a key role in developing award-winning health programmes, including initiatives in CVD risk assessment, management, community and patient support and education.

Annie co-founded Heart & Stroke Voice Ireland, the first patient-led cardiovascular alliance in Ireland, advocating for equitable, quality care for heart and stroke patients. Her work spans national awareness campaigns, including World Heart Day, World Stroke Day, ASCVD/FH Awareness, and Heart Valve Disease Awareness. In 2018 she coordinated Ireland ASPIRE, a research study carried out by Croí in collaboration with the NIPC (National Institute for Prevention and Cardiovascular Health) as part of the ESC EUROASPIRE study.

Through her leadership within Croí’s patient community and her role as a liaison to the Global Heart Hub and FH Europe Foundation, Annie bridges Irish patient advocacy from the national to the international stage, strengthening the patient voice and empowering patients and carers with the knowledge to drive meaningful change across borders.

Albert Wiegman, Amsterdam, became a paediatrician and member of staff at the Amsterdam University Medical Center in 1991. In 1993, he completed his sub-specialisation in paediatric cardiology, and the Paediatric-Lipid Department came under his care. He started detection and treatment of children with homozygous and heterozygous familial hypercholesterolaemia and other dyslipidaemias in the Netherlands. In 2020, he was appointed Associate Professor and Principal Investigator.

In 30 years, over 4000 children with inherited dyslipidaemias visited his ward. He co-authored around 150 peer-reviewed papers in this field. Since 2024, he was appointed trustee of the Familial Hyperlipidemias Europe Foundation (FH Europe Foundation).

Prof. Joanna Lane is the Chairperson of FH Europe Foundation and Founder of Stichting HCN, with over 40 years of experience at the intersection of policy, research, and practice. She serves as a Professor at the University of South-Eastern Norway and Co-Chair of the Advisory Board for the European Partnership for Transforming Health and Care Systems. Prof. Lane has worked extensively with the NHS, EU-funded projects, and international health organisations, including WHO, focusing on innovative interventions in oncology and cardiovascular disease. Her academic roles include Visiting, Special, and Honorary Professorships, and she has served as a mentor, evaluator, and EU adviser.

Elsie Evans is the Ambassador Programme Manager at the FH Europe Foundation. With over 20 years of experience in education and special education with a specific focus in neurodiversity as well as social and emotional difficulties, she now applies her skills to educate patient advocates, empowering their voices, while supporting campaigns in raising awareness of inherited lipid conditions. Elsie has collaborated with several successful awareness campaigns, working with healthcare professionals, patient ambassadors, and a variety of stakeholders, as well as community leaders to enhance public understanding of the conditions and the impact on Quality of Life. Living with HoFH, she balances her love of travel with her commitment to making a positive impact for those navigating these challenging conditions.

Magdalena Daccord, Chief Executive of FH Europe, joined the organisation in November of 2019, one month before the COVID outbreak. Since then, she grew the Network in size from 25 to 34 organisations, expanded its scope from FH to wider inherited lipid conditions with an equal focus on rare and severe hyperlipidaemias like HoFH and FCS, and since 2021 successfully included Lp(a) into the organisation’s scope. She also established international Scientific and Policy Advisory Committees, and Industry Roundtable. In the past 12 months, she set up Stichting FH Europe in the Netherlands, in order to transform and transition the charity into an EU registered non-profit. By Q1 of 2023, FH Europe Foundation applied for 3 EU grants, leading one consortium and being part of 2 other ones as part of EU4Health, Erasmus and Horizon. Since her joining, FH Europe has become a member of the WHF, EPF, EURORDIS and is a partner of the EACH alliance. FH Europe Foundation also collaborates closely with EAS, IAS, EAS FHSC as well as EAPC. She has co-authored several publications in the field of inherited lipid conditions.

Prior to joining FH Europe, Magdalena was engaged with DIA (Drug Information Association) as Head of Operations for EMEA, where she led a team of 7 and ran a portfolio of over 70 educational products for Regulatory, PV and Market Access for Pharma and MedTech, incl. the DIA Annual Meeting, with the participation of FDA, EMA, etc. She was also responsible for Patient Engagement incl. collaboration with EUPATI and EURORDIS.

Before joining the non-profit sector, Magdalena was involved in biotech and pharma industry working in various roles in rare diseases and orphan drugs.

Her professional goal is to contribute to health care redesign with a greater focus on personalised prevention, health promotion and precision medicines.

Magdalena is of Polish origin, living in Switzerland. Over the years, she volunteered with organizations furthering women’s professional and personal development, health, gender and sex equality in health (HBA, Women’s Brain Project, Thrive with Mentoring).

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 focussing 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 a number of 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.

Marina Leroy is FHEF scientific communication manager. She holds a PhD in Biology from the University of Geneva. She brings over a decade of experience at the intersection of science, communication, and strategy, helping organisations translate complex biomedical research into clear, impactful narratives for diverse audiences — from healthcare professionals to patients and the general public. Previously, Director of Scientific Communications at Weber Shandwick in Geneva, Marina has a proven track record in life sciences marketing, content strategy, and science-led stakeholder engagement. Her work spans agency leadership, project development, and cross-disciplinary collaboration, underpinned by scientific rigour and a passion for making research accessible and meaningful. She is committed to advancing evidence-based communication that connects science with society.

Jean-Luc Eiselé retired from the World Heart Federation, the global authority on heart health representing the worldwide cardiovascular community and promoting cardiovascular health for everyone. 
He has worked in medical association management for over 25 years and was honored in 2024 with the International Executive Director of the Year award by the Association of Association Executives. 
Prior to joining the WHF, he served as Executive Director of the European Respiratory Society, where he focused heavily on patient engagement through the establishment of the European Lung Foundation. As Executive Director of the FDI World Dental Federation, he developed global advocacy efforts and successfully launched World Oral Health Day. 
Since his retirement, he has remained active through pro bono work, serving as a Board Member for Addiction Suisse and collaborating with the FH Europe Foundation.

Maria Nassif is a 31-year-old advocate for Familial Hypercholesterolaemia (FH) awareness, living in France. Diagnosed with Homozygous Familial Hypercholesterolemia (HoFH) at just three years old after developing visible xanthomas, Maria has managed high LDL cholesterol levels her entire life. Despite early treatments, including daily medications and regular LDL apheresis, her cholesterol remained critically elevated, impacting her health and self-confidence as a child.

At 24, Maria underwent life-saving open-heart surgery due to severe coronary blockages. She later moved to France, where advanced medical treatments led to a significant improvement in her health, reducing her LDL levels and shrinking the xanthomas. Now, Maria carefully manages her health through medication, diet, and lifestyle changes like yoga, which helps maintain her physical and mental well-being.

A passionate advocate, Maria raises awareness about the “silent pain” of living with HoFH, emphasizing the importance of early diagnosis and treatment for those affected by this rare condition.

Elsie Evans is the Ambassador Programme Manager at the FH Europe Foundation. With over 20 years of experience in education and special education with a specific focus in neurodiversity as well as social and emotional difficulties, she now applies her skills to educate patient advocates, empowering their voices, while supporting campaigns in raising awareness of inherited lipid conditions. Elsie has collaborated with several successful awareness campaigns, working with healthcare professionals, patient ambassadors, and a variety of stakeholders, as well as community leaders to enhance public understanding of the conditions and the impact on Quality of Life. Living with HoFH, she balances her love of travel with her commitment to making a positive impact for those navigating these challenging conditions.

Magdalena Daccord, Chief Executive of FH Europe, joined the organisation in November of 2019, one month before the COVID outbreak. Since then, she grew the Network in size from 25 to 34 organisations, expanded its scope from FH to wider inherited lipid conditions with an equal focus on rare and severe hyperlipidaemias like HoFH and FCS, and since 2021 successfully included Lp(a) into the organisation’s scope. She also established international Scientific and Policy Advisory Committees, and Industry Roundtable. In the past 12 months, she set up Stichting FH Europe in the Netherlands, in order to transform and transition the charity into an EU registered non-profit. By Q1 of 2023, FH Europe Foundation applied for 3 EU grants, leading one consortium and being part of 2 other ones as part of EU4Health, Erasmus and Horizon. Since her joining, FH Europe has become a member of the WHF, EPF, EURORDIS and is a partner of the EACH alliance. FH Europe Foundation also collaborates closely with EAS, IAS, EAS FHSC as well as EAPC. She has co-authored several publications in the field of inherited lipid conditions.

Prior to joining FH Europe, Magdalena was engaged with DIA (Drug Information Association) as Head of Operations for EMEA, where she led a team of 7 and ran a portfolio of over 70 educational products for Regulatory, PV and Market Access for Pharma and MedTech, incl. the DIA Annual Meeting, with the participation of FDA, EMA, etc. She was also responsible for Patient Engagement incl. collaboration with EUPATI and EURORDIS.

Before joining the non-profit sector, Magdalena was involved in biotech and pharma industry working in various roles in rare diseases and orphan drugs.

Her professional goal is to contribute to health care redesign with a greater focus on personalised prevention, health promotion and precision medicines.

Magdalena is of Polish origin, living in Switzerland. Over the years, she volunteered with organizations furthering women’s professional and personal development, health, gender and sex equality in health (HBA, Women’s Brain Project, Thrive with Mentoring).

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 focussing 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 a number of 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.