ELF Patient Organisation Networking Day 2024

Dimitris Kontopidis is Chair of the European Lung Foundation. Dimitris is a cystic fibrosis patient and advocate and has been deeply involved in developing healthcare policy for chronic diseases. Dimitris chose not to have a lung transplant and by doing so brought ‘medicine for all’ to the forefront of Greek politics, helping to save the lives of many people with cystic fibrosis.

Dimitris has held a number of leadership roles within national and European patient organisations, including Cystic Fibrosis Europe, the Greek Patient Association and now ELF. His contributions to patient rights advocacy and improving healthcare services have been recognised through a wide range of awards. In addition to his advocacy activities, Dimitris is an architect and founded the HUMANE Network, a social enterprise that combines design with care, health, and innovation, and a non-profit NGO that focuses on empowering and advocating for people with disabilities.

Mikaela Odemyr is the Chair of the European Lung Foundation's Patient Advisory Committee and President of the Swedish Asthma and Allergy Association. Mikaela has been involved in patient advocacy for over 15 years, with a special focus on raising awareness of severe asthma and allergies. She draws on her experiences as a patient and parent, as well as her interactions with lung patients across Europe. Mikaela has held senior roles with national and European patient organisations and has worked with politicians, health professionals and policy-makers at all levels to improve treatment and care.

Ed Powell is a 17 year old student from England. He is chair of the European Lung Foundation (ELF) youth group and a member of the ELF Council. He was diagnosed with non CF-Bronchiectasis at the age of 8 years old after first showing symptoms at 5 months old. In March 2024 he was invited to speak at the European Parliament in Brussels at the Childhood Respiratory Health Event. He has also been involved with the Child-BEAR-Net since 2022.

Dr. Maria P. Neira is the Director of the Department of Environment, Climate Change, and Health at the World Health Organization. Dr. Neira started her career as a medical coordinator for Médecins Sans Frontières, working in conflict zones in Africa. She is a trained medical doctor specializing in Endocrinology and Metabolic Diseases, with additional qualifications in Public Health, Human Nutrition, and Crisis Management. Dr. Neira has received several honors, including the Médaille de “L'Ordre National du Mérite” from France and an "Extraordinary Woman" award from Queen Letizia of Spain. She was also named among the top 100 policy influencers in health and climate change in 2019.

Dr. Nicole Hass is an expert in patient advocacy with over twelve years of experience in the chronic patient sector. She played a key role in establishing the international patient advocacy department at Grifols, a pharmaceutical company. From 2018 to 2019, she advised the Federation of Respiratory Patients of Spain, focusing on its international expansion and involvement in global respiratory patient platforms. In 2020, she founded the national COPD patient association, APEPOC, where she serves as spokesperson and technical adviser. Nicole holds a PhD with cum laude honors, along with a Master’s in Public Health Administration, a Master’s in Sustainability and Corporate Social Responsibility, and an MBA.

Dr. Evi Hatziandreou is a Health Care and Life Sciences expert. She is the Global Senior Director for Health Policy and Market Access at biotechnology company Orgenesis, and Vice President of Fairlife Lung Cancer Care. She has extensive experience working in both public and private sectors and non-profit organisations, including the US Department of Health and Human Services, the US Congress, Greek Social Health Insurance Organization, RAND Europe, the Greek Minister of Education for Research, Technology and Innovation issues and other multinational and Greek organisations.

Hilde de Keyser is CEO of Cystic Fibrosis Europe and has worked on a wide range of advocacy, research and patient involvement activities within Europe and internationally.

Abdullah is a patient with Primary Ciliary Dyskinesia (PCD). Abdullah also currently volunteers as the Treasurer & Patient Rep for PCD Support UK, the UK's dedicated charity supporting those affected by PCD, championing vital research into this rare disease to improve its diagnosis, management, and treatment. Abdullah has also recently joined the ELF Patient Advisory Committee representing PCD Support UK.

Helen Parks is a member of the COVID-19 Patient Advisory Group (PAG) and Chair of United PAG and Council Member of ELF. Helen became involved in ELF after contracting COVID in March 2020. She has a keen interest in healthy lungs for life and promoting lung health especially given her own struggles with asthma. Helen is a teacher in Northern Ireland and is increasingly concerned about the rising rates of vaping in schools.

Prof. Silke Ryan is a Consultant in Respiratory and Sleep Medicine at St. Vincent’s University Hospital Dublin, Clinical Professor at University College Dublin and current President-elect of the European Respiratory Society. Silke is an internationally renowned expert in respiratory sleep disorders such as sleep apnoea. Her primary research focuses on the identification of mechanisms underlying cardiac conditions in sleep apnoea and her achievements have been recognised by numerous awards and invitations to speak at international conferences.