IPF Summit 2020

Keynote Speakers

More to come soon!

María Rita Barriuso

Patient Representative from the National Sarcoidosis Patients Association, Spain

Rita was diagnosed with sarcoidosis in 2012 and became an active member of ANES (National Sarcoidosis Patients Association from Spain).
Since 2017 she frequently collaborates with ELF (European Lung Foundation), the Sarcoidosis Patient Priorities Group and the Patient Advisory group. Rita is a co-author of the article “Sarcoidosis: Patient Treatment Priorities” published in the European Respiratory Journal in 2018. The article was written alongside Dr. Robert. P. Baughman and various other patient group representatives.

Dr. Elisabetta Balestro

Chest Physician at the Clinic for Interstitial Lung Disease at the University Hospital of Padova

Dr. Balestro is in charge of the outpatients Clinic for Interstitial Lung Disease at the University Hospital of Padova and of the selection of candidates for the Lung Transplant Program.
She worked to develop a regional network for referral of patients maintaining a multidisciplinary team that serves as second opinion for non-academic centres. She is also very active in leading the initiatives of the Patients’ organization from Padova, such as IPF World Week and psychologic support for patients. Her main research interests include interstitial lung disease and in particular Idiopathic Pulmonary Fibrosis.

Dr. Elisabeth Bendstrup

Associate professor at the Department of Respiratory Diseases and Allergy at Aarhus University Hospital, Denmark

Elisabeth Bendstrup is a pulmonary physician, senior consultant and associate professor at the Department of Respiratory Diseases and Allergy at Aarhus University Hospital in Denmark. She is head of the Center for Rare Lung Diseases, a tertiary referral center for ILD, sarcoidosis and other rare lung diseases. Dr. Bendstrup’s research interests include epidemiology in interstitial lung diseases and connective-tissue-diseases-associated interstitial lung diseases, quality of life in interstitial lung diseases, rehabilitation, and treatment of IPF and other ILD.

Francesco Bonella

Vice-Chair of the EU-IPFF Scientific Advisory Board

Francesco Bonella is Associate Professor of Medicine and Head of the Division for Interstitial and Rare Lung Disease, Department of Pneumology at the Ruhrlandklinik University Hospital in Essen, Germany. After receiving his MD and Board Certification at the University of Verona, Italy, he earned his international PhD in Interstitial Lung Diseases at the University of Essen under the guidance of Professor Ulrich Costabel. Dr Bonella’s research interests include IPF, alveolar proteinosis, rheumatic-associated ILDs, and sarcoidosis with a special focus on biomarkers, genetic predisposition and applications of bronchoalveolar lavage. In recent years, he has acted as an investigator for major clinical trials in IPF, sarcoidosis and alveolar proteinosis. He is a reviewer for numerous scientific journals, Section Editor of Current Opinion in Pulmonary Medicine and has authored many chapters in textbooks, original articles, case reports, editorials and reviews. He is the Chair of the ERS Rare DPLD Group (12.04) and co-founded EuPAPNet, the European Network for pulmonary alveolar proteinosis. He is also the founder and now vice-chair of the EU-IPFF Scientific Advisory Board.

Dr. Raphaël Borie

Pulmonologist at Bichat Hospital, Paris, France

Dr. Borie is a pneumologist at Hôpital Bichat in Paris with special interest in
rare lung diseases and in interstitial lung disease, particularly on genetic
cause of pulmonary fibrosis.

Carlos Lines Millán

EU-IPFF President

Carlos Lines Millán was elected president of the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) in 2016. He is also co-founder and president of the Spanish IPF association AFEFPI (Asociación de familiares y enfermos de fibrosis pulmonar idiopática). Mr. Lines has been active in the health field, with a focus on IPF, over the past 10 years, leading on multiple initiatives at the local, national and EU levels.

Ruth Córdova

Asociación De Familiares Y Enfermos De Fibrosis Pulmonar Idiopática (AFEPI) Representative

Ruth has more than 25 years of professional experience in the consulting, telecommunications and IT sector. She is a Steering Committee member of the IPF Spanish association and has been politically and socially engaged for the past eleven years. Above all helping patients and their relatives is a priority for Ruth. She has participated in European IPF projects since before forming the federation with the aim of improving access to IPF treatments in Europe, and in Spain, and empower patients.

Dr. Bruno Crestani

Professor of Pneumology at the Paris-Diderot University

Bruno Crestani is Professor of Pneumology at the Paris-Diderot University, head of the Reference center for rare pulmonary diseases in Bichat hospital in Paris, and the director of the Inserm research group ``Inflammation and pulmonary fibrosis`` at the Xavier Bichat medical school. His research interests include the genetics of pulmonary fibrosis and the pathophysiology of fibrotic lung disorders with the aim to identify new therapeutic targets.

David Crosby

Patient Representative

David Crosby is a double lung transplant recipient resulting from IPF. Since his transplant, he has been advocating for lung fibrosis patients in Ireland by speaking at related events, raising awareness for organ donation and raising awareness for the patient support group; Irish Lung Fibrosis Association as a patient ambassador. In addition, David has been competing in marathons and has completed four marathons. He hopes to complete two more to receive his world series super six medal, which would be a world record.

Prof. Dr. Oliver Distler

Professor at the University of Zurich

Dr. Distler is Professor at the University of Zurich and Chairman of the
Department of Rheumatology, University Hospital Zurich and Balgrist
University Hospital in Zurich, Switzerland. Since 2018, he is Head of the
Business Division, Traumatology-Dermatology-Rheumatology-Plastic
Surgery and Emergency Medicine (TDR), at the University Hospital Zurich
and Board Member at the Faculty of Medicine at the University of Zurich.
Next to his clinical work at the outpatient and inpatient clinic in the field of
Rheumatology, he is regularly involved in teaching activities and speaker at
international conferences and further educations. In addition, he is Co-
Founder of multiple international networks and training programs, e.g.
EUSTAR (European Scleroderma Trials and Research Group), World
Scleroderma Congress, JSRD (Journal of scleroderma and related diseases),
Educational Masterclass series on SSc-ILD.

Colin Edwards

Chief Scientific Officer at patientMpower Ltd

Colin is responsible for developing and implementing patientMpower’s clinical evaluation programme in pulmonary fibrosis and renal medicine.

He is a member of the Irish Thoracic Society Interstitial Lung Disease Registry Steering Committee and of the Institute of Directors in Ireland. He was previously General Manager/Head of Medical Affairs at the Ireland affiliate of Boehringer Ingelheim.

Colin is driven by curiosity and interested in exploring how new technologies can improve the understanding of medical conditions and their impact on peoples’ lives.

Ron Flewett

Pulmonary Fibrosis Trust Trustee

Ron was diagnosed in 2014 with Idiopathic Pulmonary Fibrosis at the age of 53 with a 3-5 year life expectancy. He made it his personal goal to raise as much awareness as possible of this awful disease. He is a member of the EU-IPFF and chairman of Papworth support group as well as Trustee of Pulmonary Fibrosis Trust. He has attended many awareness campaigns including with MP’s and MEP’s in England and abroad.

Liam Galvin

EU-IPFF Secretary

In addition to representing the Irish Lung Fibrosis Association, Liam is one of the co-founders of EU-IPFF. He is on the European Lung Foundation Patient Advisory Committee, is a Patient Lead with the European Reference Network on Rare Respiratory Lung Diseases, has co-authored various publications including the joint ATS/ERS/ALAT/JTS guidelines on IPF Diagnosis in 2018, is a member of the ERS led Ariane IPF Meta-Registry project and is registered with the EMA as a patient expert. Liam focuses his advocacy work on promoting the collective working of academia, health care professionals, industry and patients.

Jan Geissler

Founder and CEO of Patvocates

Jan Geissler is the founder and CEO of Patvocates, a think tank and consultancy on patient advocacy, health policy and patient engagement in research. He leads the team running the EU-IPFF Secretariat. He was the Director of the European Patients Academy (EUPATI) from 2012-2017 and still leads the German EUPATI platform. Jan is a work package leader of the IMI2-funded EU project HARMONY on big data for better outcomes in hematology. A leukemia survivor since 2001, Jan co-founded the patient organisations LeukaNET/Leukaemie-Online.de, the European Cancer Patient Coalition, the CML Advocates Network, the Leukemia Patient Advocates Foundation, WECAN and the Acute Leukemia Advocates Network. Jan represents patients on a number of advisory boards and committees, e.g. ECCO, EHA, ISPOR, Berlin Institute of Health, EuroBloodNET, International CML Foundation, the German National Decade Against Cancer and the Ethics Committee of the Bavarian Chamber of Physicians.

Klaus Geissler

EU-IPFF Board Member

Klaus is the representative to EU-IPFF from the German Lungenribrose e.V. In 2012, he was diagnosed with IPF and has since gathered information about the management of this disease and the patient advocacy landscape in Europe. He disseminates this information during speeches and written publications. He is also supporting HCPs with the development of national guidelines.

Radostina Getova

Idiopathic Pulmonary Fibrosis Association Bulgaria

Radostina is a communication consultant and has been working with rare disease patient groups for four years in the fields of policy, advocacy and social awareness. Her extensive experience in public relations and communications, with both national and international non-governmental organizations, has given her the knowledge and tools to develop the foreign activity and partnership relations of patient societies, such as the Idiopathic Pulmonary Fibrosis Association Bulgaria.

Dr. Barbara Girerd

Genetic Counselor

Dr. Barbara Girerd has been a genetic counselor for 12 years in the field of rare lung diseases. She has a PhD in science and is involved in basic and clinical research.

Dr. Sabin Handzhiev

Pulmonologist at the Universitäsklinikum in Krems, Austria

Dr. Sabin Handzhiev is a Pulmonologist at the Universitäsklinikum in Krems, Austria. He is Member of the ILD Section of the Austrian Society of Pneumology. He enjoys the cooperation with Lungenfibrose Forum Austria and participates in the IPF Patients Helpline.

Ewa Jassem

Head of Pneumonology & Allergology at the University Hospital in Gdańsk, Poland

Ewa Jassem is a professor pneumonology and allergology and the head of
Department of Pneumonology and Allergology at the University Hospital in
Gdańsk, Poland. She is a co-author of 257 publications (Web of Science
database, viewed Oct. 2019), mainly on lung cancer, asthma, COPD and
mastocytosis. She is also the editor of four books on pneumonology and
the author of 25 book chapters. She is a member of the Polish Respiratory
Society executive board and has contributed to the development of
numerous treatment guidelines – among others in IPF, COPD and palliative
care in chronic respiratory diseases. She is also an initiator and coordinator
of the regional program of integrated care in patients with advanced

Gisli Jenkins

Professor of Experimental Medicine at the University of Nottingham

Professor Gisli Jenkins is an NIHR Research Professor and Professor of Experimental Medicine at the University of Nottingham. His research focus is on interstitial lung disease, and pulmonary fibrosis in particular. He has spent over 20 years, studying at University College London, and the University of California, San Francisco, to define mechanisms of fibrogenesis to enable the development of stratified approaches to the treatment of progressive pulmonary fibrosis. His research has received the funding from the NIHR, the NC3Rs, the Welcome Trust, the Medical Research Council, Arthritis Research UK and has been published in leading academic journals including the Journal of Clinical Investigation, Lancet Respiratory Medicine, Nature Communications and Science Signaling. He is joint Editor-in-Chief of Thorax and a Trustee of the patient charity Action for Pulmonary Fibrosis.

Steve Jones

EU-IPFF Board Member

Steve Jones is the Chair of Action for Pulmonary Fibrosis, UK. He suffered from Idiopathic
Pulmonary Fibrosis for eight years but was fortunate to receive a lung transplant in 2016.
During his professional life, he worked as an adviser to the European Union, World Bank and other agencies on development programmes in Asia and Africa. He is a European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) Executive Board Member and is a member of the Council of the European Lung Foundation.

Nadia Kamel

Project Officer, Eurocarers

Nadia joined Eurocarers in September 2018, works on a number of European projects related to integrated care, new technologies and demographic change and raises awareness about project outcomes. She also works on raising awareness about the significant contribution provided by informal carers to our health and social care systems, and the need for policies to support and empower them. Before that she worked as Scientific Officer at the European Respiratory Society to advance policies for better prevention, care and research in respiratory medicine.

Dariusz Klimczak

President of Polish Society for Idiopathic Pulmonary Fibrosis Patients’ Support

Dariusz had been an IPF patient for three years before receiving a lung transplantation. He is the head of the Polish association IPF for the past two years. After the transplant, he returned to an active working life and, despite exceeding the retirement age, still works. He actively cooperates with the people affected by IPF to improve the quality of life of these patients.

Georgi Kostov

Pulmonary Hypertension Association Europe Representative

Georgi Kostov is a pulmonary hyptertension (PH) patient has been working with the Pulmonary Hypertension Association Europe for seven years. He has experience in all stages and activities related to the patient organization, including campaigning, project management, advocacy, networking, building relationships, participation in international leaders’ conferences, trainings, and much more.

Prof. Dr. Michael Kreuter

Thoraxklinik - Universitätsklinikum Heidelberg

Dr. Kreuter is a Professor of Internal Medicine at the University of Heidelberg, Germany, as well as Head of the Centre for Interstitial and Rare Lung Diseases, Thoraxklinik, University of Heidelberg, which is a European Reference network (ERN) certified ILD centre. Furthermore, he is a principal investigator of the German Centre for Lung research. Dr. Kreuter is board certified in internal medicine, pulmonology and haematology-oncology. Following a clinical fellowship in Münster, Germany and a research fellowship at Harvard Medical School Boston, USA, he has been working at the Thoraxklinik since 2005. His clinical and scientific interests focus on interstitial and rare lung diseases. He is conducting a number of research projects on comorbidities, epidemiology, biomarkers and diagnosis and therapy of interstitial lung diseases. He is also committed to educational programmes and will host the ERS ILD school in November 2019 and April 2020.

Gudrun Kreye

Professor & Head of the Palliative Care Unit in Krems, Austria

Dr. Gudrun Kreye is palliative care physician and hemato-oncologist. She is the head of the Palliative Care Unit in Krems, Austria. Since she was a medical student, she was involved in palliative care. Gudrun Kreye is the deputy chair of the “ESMO Designated Centre of Integrated Palliative Care and Oncology” and has national and international experience in palliative care and oncology. Additionally, she performed translational research in the US and Vienna before she finally specialised in palliative care.

Katleen Leceuvre

ILD Nurse, University Hospitals Leuven, Belgium

Katleen Leceuvre works at the University Hospitals Leuven, Belgium. She is assigned to the pneumology ward specialising in lung transplantation, pulmonary hypertension and interstitial lung disease. She became the first specialised nurse in interstitial lung disease and an established value in this field of very specific expertise. Her main interests are education, quality of life, advanced care planning and end of life care. Her need to emphasise the importance of the role of a specialised nurses in interstitial lung diseases, had led her to different international contacts, including national and international patient organisations (EU-IPFF) and international networks (ILD-INN).

Katarzyna Lewandowska, MD, PhD

Representative of the National Institute of Tuberculosis and Lung Diseases Warsaw

Working with IPF and ILD patients for over 15 years, Dr. Lewandowska works in the largest ILD center in Poland. She is also a member of the working group preparing the first Polish IPF diagnosis and treatment guidelines, regularly holds lectures for students and doctors, as well as being active in research. Additionally, Dr. Lewandowska is a founder and Vice President of the Polish IPF Patients’ Society.

Toby Maher

Professor of Interstitial Lung Disease at the National Heart and Lung Institute at Imperial College London, UK

Toby Maher is Professor of Interstitial Lung Disease at the National Heart and Lung Institute at Imperial College London, UK and practices as a Pulmonologist at Royal Brompton Hospital, London. His research interests include clinical trials, biomarker discovery, the lung microbiome and host immune response in the pathogenesis of IPF and clinical trials in fibrotic lung disease. He is an associate editor for American Journal of Respiratory and Critical Care Medicine. He has authored over 220 papers and book chapters on IPF.

Gergely Meszaros

Advocacy Manager – PHA Europe

Meszaros is a graduated economist, tax advisor and lawyer. Has more than 15 years’ experience in the banking sector as an attorney at law. Gergely has been active in the pulmonary hypertension community since 2010: board member of PHA Europe for 2012-2013 and 2014-2015, since 2015 a staff member focusing on advocacy work. He plays an active role on the rare disease field. Most recently he has become medical steering committee member of ERN-Lung, ERS CTEPH TF and CRC PHAROS TF member and he is a member of Rare2030.

Dr. Maria Molina-Molina

Associate Professor at the ILD Unit at Bellvitge University Hospital, Spain

Dr. Molina has been working in IPF for twenty years, including clinical and research areas. She leads the ILD Unit at Bellvitge University Hospital, the academic ILD program at the University of Barcelona, and the research group of Pulmonology of IDIBELL. Thesis director of seven new ILD professionals and author of one hundred indexed research articles. Coordinator of clinical guidelines and trials in ILDs. She contributes in the increase of ILD trained professionals. Participant of the IPF patient charter and Steering Committee of the EU-IPF Federation, she has contributed in improving IPF awareness and policymakers.

Anna Murphy

Respiratory Pharmacist Consultant at the University Hospitals of Leicester NHS Trust, UK

Dr. Anna Murphy is a consultant respiratory pharmacist at University Hospitals of Leicester NHS Trust. The clinical aspect of her post offers assessment, medicines optimisation, monitoring and advice to patients with respiratory disease, especially patients with ILD and asthma. Working across Leicestershire the post includes interface care and the development of services for respiratory patients. She works with several national organisations, e.g. NICE, BTS, SIGN, NHSE, on issues surrounding prescribing in respiratory disease.

Marek Opas

Member of Polish Society of Idiopathic Pulmonary Fibrosis Patients' Support

Marek was diagnosed with IPF in 2014. Despite a bad prognosis, he
is still professionally active. He is one of the founding members of the
Polish Society for Supporting Patients with Idiopathic Pulmonary
Fibrosis and actively cooperates with people affected by IPF.

Stefano Pavanello

Unione Trapiantati Polmone di Padova Representative

Mr. Pavanello is a Cystic Fibrosis patient and had the opportunity to receive a double lung transplant in 2012. Since 2014 he is president of Unione Trapiantati Polmone di Padova, a patient organization focusing on lung transplant and rare lung diseases.

Dr. Helen Parfrey

Consultant Respiratory Physician and trustee for Action for Pulmonary Fibrosis

Dr. Helen Parfrey is a consultant respiratory physician at the Cambridge Interstitial Lung Disease Service, Royal Papworth Hospital and lead for East Anglia ILD Network. She completed her medical training at University of Oxford and obtained her PhD at University of Cambridge. She was a Wellcome Trust Fellow at National Jewish Health in Denver, Colorado. She has research interests in the innate immune response in pulmonary fibrosis and RA-ILD. She is also a founding trustee for Action for Pulmonary Fibrosis.

Piotr Radwan- Rohrenschef MD, PhD

Polish Society for Idiopathic Pulmonary Fibrosis Patients’ Support

Dr. Radwan-Röhrenschef has been working with pulmonology patients for over twenty years and has recently specialised in ILD and IPF patients. He is a pulmonologist, with a primary interest in diagnostic methods of ILD, particularly bronchoscopy and cryobiopsy. He is also the EU-IPFF Delegate from the Polish Society for Idiopathic Pulmonary Fibrosis Patients’ Support.

Anne-Marie Russel

Chair of the EU-IPFF Scientific Advisory Board

Anne-Marie is a post-doctoral researcher at Imperial College Healthcare NHS Trust London. Her research interests are in patient centredness, health metrics and fibrotic lung conditions. Projects include exploring the usefulness of Patient Activation Measures in people; validating an Interstitial Lung Diseases (ILD) specific Patient Reported Experience Measure (PREM) and further validation and translation of the 12-item patient-reported outcome measure for patients with idiopathic pulmonary fibrosis (IPF-PRoM© 2018 Imperial Innovations). Anne-Marie represents ILD nursing interests at international committees including being the Chair of the EU-IPFF Scientific Advisory Board.

Laurens De Sadeleer

Professor at the Katholieke Universiteit Leuven, Belgium

After finishing his Medicine Studies, Laurens got interested in the fascinating world of Interstitial Lung Disease. At this moment, he combines his training in Pulmonary Medicine with a PhD in all aspects of Hypersensitivity Pneumonitis, including diagnosis, treatment and pathophysiology.

Dr. Alexander Simidchiev

Physician and Chairman of the Executive Board of the Association Air for Health

Dr. Simidchiev is a physician with three clinical specialties (internal medicine, pulmonary diseases and public health) and a wide experience in the clinical, regulatory, business, humanistic and advocacy aspects of lung diseases. His professional interests range from narrow topics like novel lung function screening criteria for lung fibrosis to broad topics like multidisciplinary teams for improving care of highly complex lung conditions.

Assoc. Prof. Paolo Spagnolo

University of Padua, Italy

Dr. Spagnolo has been working in the field of interstitial lung diseases for almost 20 years, including six years at the Royal Brompton Hospital in London, where he was awarded a PhD in genetics of sarcoidosis. His main research interests are surrounding genetic predisposition to pulmonary fibrosis and the development of novel treatments. He has co-authored more than 100 peer-review publications, mostly around interstitial lung diseases, idiopathic pulmonary fibrosis and sarcoidosis.

Dr. Sara Tomassetti

Respiratory physician at GB Morgagni Hospital, Forlì, Italy.

Dr. Sara Tomassetti obtained her medical degree at Bologna University, Italy, completed her training in respiratory medicine at the University of Modena, Italy, and subsequently specialized in interstitial lung diseases (ILD) in Forlì GB Morgagni Hospital, Italy. She is a member and former leader of the ILD study group of the Associazione Italiana Pneumologi Opsedalieri, and a member of the European Respiratory Society. Dr. Tomassetti has been the primary investigator in several clinical trials to study the effects of experimental drugs in idiopathic pulmonary fibrosis and in fibrotic lung diseases.

Chantal Vandendungen

Vice President for International Relations at ABFPI

Chantal is an active member of ABFPI, a non-profit Belgian (French speaking) organisation committed to defending access to information, treatment and support for IPF patients, their carers and their families. Her husband Albert was diagnosed with IPF in 2012 and is currently awaiting lung transplant.

Gunther Wanke

Lungenfibrose Forum Austria Representative

Günther Wanke was diagnosed with pulmonary fibrosis in 2013.
Since then he has been active within the various patient organisations. In 2016 he founded the Lung Fibrosis Forum Austria together with other patients. As a Chairman, Mr. Wanke represents the ILD patients and supports their needs and rights in the healthcare system. A particular concern for him is to advocate for more research, rapid diagnosis and the best treatment options. Finally, Mr. Wanke tries everything to find a treatment that heals IPF.

Joep Welling

Federation of European Scleroderma Associations Representative

Joep Welling was born and raised in the Netherlands. Since 2010 he has been actively involved as a patient representative and advocate in many national and international projects aiming to improve research and health care for patients with scleroderma. Currently, Joep puts his energy into advocacy for the Federation of European Scleroderma Associations (FESCA). His professional background as a nurse (specialisation in intensive care and anaesthesiology), infection control practitioner, as well as his work as an IT consultant for pharmacies and a pharmaceutical wholesaler, helps him achieve these goals and gain more attention for scleroderma.

Assoc. Prof. Wim Wuyts

Catholic University of Leuven

Dr. Wuyts is the Associate Professor at the Catholic University of Leuven (K U Leuven), Belgium, where he is Head of the Laboratory of Respiratory Medicine and the driving force behind the interstitial lung disease programme. He is also Head of the Unit for Interstitial Lung Diseases and is involved in the Unit of Pulmonary Hypertension at University Hospitals Leuven. His speciality is in interstitial lung disease and pulmonary arterial hypertension. His research interests include chronic inflammation and fibrosis and he conducts clinical research in interstitial lung disease. Furthermore, Dr. Wuyts is a member of various national and international taskforces and scientific boards, in addition to being elected as a member of the Executive Committee of the World Association of Sarcoidosis and Other Granulomatous Diseases (WASOG) in October 2014.