ELF Patient Organisation Networking Day 2025

Liam Galvin has been involved with patient advocacy since 2009 when his family was impacted by Pulmonary Fibrosis. He is a volunteer director of the Irish Lung Fibrosis Association and co-founder and CEO of the European Pulmonary Fibrosis Federation.

Louise Bouman is a patient advocate in pulmonary hypertension, combining her background in healthcare and marketing with lived experience. As President of the Dutch PH Association and Board Member of The Alliance for PH, she works to ensure that patient voices shape care, research, and policy. She is passionate about connecting with others to strengthen meaningful patient involvement across the lung health community.

Luca Roberti is a sleep apnoea patient and founder of the Italian Sleep Apnoea Patient Association (Apnoici Italiani). As President, he is committed to recognising the pathology and implementing diagnosis and treatment pathways throughout the country. As patient advocate he is delegated by EPF, in the National Coordination Centre of Ethics Committees in Italy. He is a patient expert in Medical Device (MDR), HTA and Digital Therapeutics.

Marion Wilkens, born in 1969, worked as a chemical engineer for many years before she was diagnosed with alpha-1-antitrypsin deficiency. Her two children are carriers of the disease. Looking for information about the disease, she and her husband came across the patient organisation Alpha1 Deutschland, which took away their fears by providing information. Being a member of the Board since 2013 she became president of Alpha1 Deutschland e.V. in 2015.

With now more than 1,000 members Alpha1 Deutschland e.V., established in 2001, is the largest alpha-1 patient organisation in Europe. The organisation stands for the old and proven as well as for innovation and new directions. It is a member of ACHSE (Alliance for Chronic Rare Diseases), the DLS (German Lung Foundation), the KNW (Children's Network) and the DGP (German Society for Pneumology and Sleep Medicine) and collaborates closely with many other organisations both in Germany and internationally.

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.

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 President (2025) 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.

Maya Mailer is a powerful communicator with 20 years of experience in campaigning, strategy, and coalition building for climate and social justice. She is Co-Director of Our Kids’ Climate, a global organization supporting community leaders worldwide to push for clean air and climate solutions through parent-led and family-friendly initiatives. She is also the co-founder of Mothers Rise Up, a UK group, running some of the most creative 'artivist' campaigns in the climate space. She was the former Head of Humanitarian Policy and Campaigns at Oxfam, living and working in South Sudan and Kenya, and across the Middle East. Maya has written and spoken about the power of parent-climate organizing for the London School of Economics, Huffington Post, Early Childhood Matters, and Women’s Health magazine, BBC News, and Sky News, among others. She has three children and loves spending time with them in parks near her home in Ealing, London.

Shane Fitch, Founder & President Lovexair has dedicated 26 years to respiratory healthcare and advocacy on behalf of patients and caregivers. The Foundation has 15 years' experience in digital health through HappyAir Ecosystem, providing preventive care, education globally including impact poor air quality on citizen health.

Hilary Pinnock is Professor of Primary Care Respiratory Medicine at the University of Edinburgh. She leads programmes of work in the Centre for Applied Respiratory Research, Innovation and Impact (CARRii), the RESPIRE Global Health Research Unit, and the European Respiratory Society Clinical Research Collaboration ‘CONNECT’.

Her research focusses on delivery of care, specifically implementation of supported asthma self-management in routine primary care, and digital health interventions for non-communicable diseases. With colleagues from Bangladesh, India and Malaysia, she is evaluating pulmonary rehabilitation tailored to low resource settings.

Hilary chairs the Education Council of the European Respiratory Society.

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.