Black couple jogging in a snowy park
Asthma

Severe asthma patient conference

This event has ended. Recordings of the event are available to watch below.

Online
21/01/2023

About the conference


On Saturday 21 January 2023 we held a free online patient conference that focused on severe and difficult asthma.

The conference was co-chaired by a person living with severe asthma and a healthcare professional, with presentations covering the following topics:

  • Overview of severe and difficult-to-control asthma and patient experiences
  • Current treatments
  • Choosing the right treatment
  • Severe asthma and pregnancy
  • Non-pharmacological treatments
  • Living with severe asthma
  • Getting the most out of severe asthma care
  • New research and treatments

Full details of the day, including timings, speakers and presentation titles can be found in the programme below.

View the full programme

Speakers, chairs and contributors


Presentations were from both patient and medical experts. Attendees had the opportunity to ask questions to the speakers.

Olivia Fulton - profile image
Olivia Fulton
United Kingdom

Olivia Fulton is a severe asthma patient advocate from Edinburgh, Scotland. Olivia is the Patient Co-Chair of the Severe Heterogenous Asthma Research collaboration, Patient-Centred (SHARP), helping to ensure research focuses on the priorities of people living with severe asthma. Olivia is involved with a wide range of organisations to improve treatment and care including the European Lung Foundation, Asthma and Lung UK, Cochrane and ICU Steps. Olivia has delivered training to researchers and health professionals around involving patients and members of the public in research and shared her experiences at many conferences.
https://www.linkedin.com/in/olivia-fulton-449862186/?originalSubdomain=uk


Professor Ratko Djukanovic - profile image
Professor Ratko Djukanovic
United Kingdom

Ratko Djukanovic is Professor of Medicine at the University of Southampton and Honorary Consultant Physician at University Hospital Southampton Hospitals Trust, with a primary interest in respiratory medicine, especially asthma. His career of more than 3 decades in respiratory medicine has enabled him to undertake basic research into asthma mechanisms, relying on samples obtained from patient volunteers, with a focus on stratification of asthma into subtypes, or phenotypes. He has always been supportive of collaborative work and has founded many collaborative studies, including U-BIOPRED and SHARP. He firmly believes that all research should be guided by patients’ needs and that patients should be at the heart of all research projects.


Kjeld Hansen - profile image
Kjeld Hansen
Norway

Kjeld Hansen is the Chair of the European Lung Foundation. He is an experienced patient advocate and has been involved in a wide range of research and advocacy activities to improve care for respiratory patients. Kjeld has moderate to severe asthma. In his professional life, he works at Kristiania University College Oslo, Norway and is also associated with Copenhagen Business School in Fredericksburg, Denmark.


Dr Ramesh Kurukulaaratchy - profile image
Dr Ramesh Kurukulaaratchy
United Kingdom

Dr Ramesh Kurukulaaratchy is Associate Professor at the University of Southampton and Honorary Consultant in Respiratory & General Medicine plus Allergy at University Hospital Southampton, United Kingdom (UK). Ramesh led the Regional Difficult Asthma Clinic at Southampton for 11-years and developed it as a multidisciplinary team. His research interests include studying the development of asthma and allergy across the lifetime, identifying predictors of asthma and allergy-risk and potential ways of preventing asthma and allergy development. He is involved in several long-term asthma and allergy studies through the Isle of Wight research group. He also leads the WATCH study of difficult asthma at Southampton, studying difficult asthma subtypes at both clinical and molecular levels and has a particular interest in the concept of multimorbidity. Ramesh holds grants with NIH, Asthma and Lung UK and Industry, is involved in several US and European research collaborations and has authored over 95 scientific publications.


Hanna Nielsen - profile image
Hanna Nielsen
Sweden

Hanna Nielsen is a severe asthma patient advocate from Sweden.


Professor Vanessa McDonald - profile image
Professor Vanessa McDonald
Australia

Professor Vanessa McDonald is a Professor of Chronic Disease Nursing in the School of Nursing and Midwifery at the University of Newcastle, Australia. She is Co-Director of the Centre of Excellence in Severe Asthma and the Director of the Centre of Excellence in Treatable Traits. Vanessa’s research interests are centred around the development of innovative approaches to the management of chronic airway diseases, particularly severe asthma and COPD. She is passionate about the development and implementation of personalised medicine strategies that place the person at the centre of health care delivery.


Dominique Hamerlijnck - profile image
Dominique Hamerlijnck
Netherlands

Dominique Hamerlijnck has a Masters in Philosophy, specialised in ethics and a Masters in Business Administration. Dominique is one of the European Patients’ Academy on Therapeutic Innovation (EUPATI) fellows.
Dominique has worked as a patient expert especially in the field of severe asthma. She has been successful in getting the patient voice heard and included in development in care and medicine and device development. Dominique is involved in the SHARP Severe Heterogenous Asthma Research collaboration, Patient-Centered Clinical Research Collaboration and many other research projects.
https://www.linkedin.com/in/dominique-hamerlijnck-a3b8ba/


Maja Zrnić - profile image
Maja Zrnić
Slovenia

Maja Zrnić is employed at the Golnik University Clinic for Lung Diseases and Allergy in Slovenia. She is an active board member in the pulmonology section of the Chamber of the Association of Slovenia and a member of the International Coalition of Respiratory Nurses. At the same time, she is part of a multidisciplinary team for the treatment of severe and problematic asthma. She stands for high-quality and safe treatment of patients with asthma and for appropriate education and training of medical professionals. Maja participates in various research and spreads knowledge about the appropriate treatment of patients with asthma through active lectures.


Dr Anneke ten Brinke - profile image
Dr Anneke ten Brinke
Netherlands

Dr Anneke ten Brinke works as a pulmonologist at the Medical Centre Leeuwarden, The Netherlands, were she started a Severe Asthma Centre and is involved in clinical care of patients with severe asthma. She built an international reputation as an expert on severe asthma and was rewarded to become Fellow of European Respiratory Society (FERS) in 2021.

Anneke chairs the Dutch Severe Asthma Registry (RAPSODI), participates in several national and international guideline committees and Task Forces on asthma and has an active role as National Lead and Study Coordinator in the ERS Clinical Research Collaboration SHARP, the European Severe Asthma registry.


Karen Vande Casteele - profile image
Karen Vande Casteele
Belgium

Karen Vande Casteele is a severe asthma patient from Ghent, Belgium. She studied languages but had to give it up when she developed Addison's disease.
When she feels well enough she tries to give people with severe 'invisible' chronic illnesses a voice.


Luciano Cattani - profile image
Luciano Cattani
Italy

Luciano Cattani is a severe asthma patient advocate, founder and President of the Italian Severe Asthma Association, Associazione Asmagrave.
In his professional life, Luciano was an executive in the Pharmaceutical Industry from 1994 to 2010. He developed severe asthma as an adult and it took several years to get a diagnosis and appropriate treatment.


Professor Renaud Louis - profile image
Professor Renaud Louis
Belgium

Prof Dr Renaud Louis is full professor, academic head of the department of respiratory medicine at University of Liege and CHU of Liege, Belgium since 2004. He served as secretary of the group 5.3 allergy and Immunology of the assembly 5 “Airway diseases” at the European Respiratory Society (ERS) from 2002 until 2005. He was president of the Belgian Thoracic Society from 2013 until 2014. He currently sits in the steering committee of the SHARP (ERS research project on Severe Asthma) and has co-chaired the ERS task force on “Diagnosis in asthma in adults” just recently published. He has focused his clinical research on asthma for 30 years developing the technique of induced sputum as a research tool to investigate mechanisms of airway inflammation but also applying it in clinical practice as an aid to asthma management. He is currently running, together with Pr Dr Florence Schleich, a busy asthma clinic at CHU Liege with more than 200 hundred severe asthma patients receiving biologics. He has become GINA advocate in 2020 and is author or co-author of more than 380 publications. He was associate editor of International Journal of Clinical Practice (section respiratory medicine) and European Respiratory Review.


Mia Chapman - profile image
Mia Chapman
United Kingdom

Mia is a busy, full-time working mum and step-mum to 6 children. She has been a severe asthmatic following a virus at the age of 21. Mia believes in positivity and refuses to let asthma rule her life. She has been taking a biological drug for quite some time and it has totally changed her asthma management.


Dr Rolf Wolters - profile image
Dr Rolf Wolters
Switzerland

Dr Rolf Wolters works as a respiratory physician at the Dutch Asthma Centre in Davos, Switzerland (Nederlands Astmacentrum Davos). He is an expert in Alpine Altitude Climate Treatment (AACT) and supervises a team of healthcare professionals who treat patients with severe asthma over the course of 8 to 10 weeks.


Stephanie Wilkinson - profile image
Stephanie Wilkinson
United Kingdom

Betty Frankemölle - profile image
Betty Frankemölle
Netherlands

Vildana Mujkic - profile image
Vildana Mujkic
Bosnia and Herzegovina

Professor Sven-Erik Dahlén  - profile image
Professor Sven-Erik Dahlén
Sweden

Sven-Erik Dahlén (MD, PhD, Fellow of ERS and BPS) is professor of asthma and allergy research at Karolinska Institutet in Stockholm and the Lung- and Allergy Clinic at Karolinska University Hospital. He is recognised for translational research on biological effects of eicosanoids (Leukotrienes, prostaglandins and related compounds) and the use of eicosanoid metabolites as biomarkers in asthma. He is leading international and national consortia for phenotyping of severe asthma (BIOAIR, U-BIOPRED, BIOCROSS, and the asthma part of 3TR). He has much experience with both preclinical research and clinical trials for the development of new treatments for asthma.


Professor Celeste Porsbjerg - profile image
Professor Celeste Porsbjerg
Denmark

Celeste Porsbjerg is a Professor of Severe Asthma, Senior Consultant and Head of the Respiratory Research Unit, Department of Respiratory Medicine Bispebjerg Hospital, Copenhagen.
Celeste has worked within asthma research for over 20 years, covering a number of topics within asthma phenotypes, airway pathophysiology and airway immunology mechanisms.
As a clinical researcher, her key focus is to solve important clinical problems for patients, through combining clinical studies with state-of-art laboratory methods, in collaboration with international translational asthma researchers. I head the Respiratory Research Unit at Bispebjerg Hospital, the largest of its kind in Denmark, with an advanced set-up for in-depth clinical and pathophysiological patient assessments. In 2022 she was appointed as co-chair of SHARP, an international severe asthma research collaboration.


Dia Sue-Wah-Sing - profile image
Dia Sue-Wah-Sing
Canada

Dia is a lifelong maker, nonprofit program developer, severe asthmatic sometimes known as a badassmatic, advocate, Stanford Medicine X ePatient Scholar, and a patient leader of the Canadian Severe Asthma Network. Dia was diagnosed with severe asthma in 2010, following an asthma diagnosis in her childhood. She became interested in asthma advocacy, out of necessity to improve her quality of life. Her lifelong participation in sport led her to a BPHE, BS, MS in Physical Education, Kinesiology and Biomechanics. She refuses to be bound by limited options, getting “sick enough “ for transplant and the notion that reduced quality of life is “par for the course”. She took matters into her own hands by arming herself with research, having the difficult discussions with care teams, advocating for enhanced inclusion in decision making and becoming an advocate for patients to build collaborative teams of their own care. She has an infectious enthusiasm for clinical trial participation and patient involvement in respiratory research.


Irantzu Muerza Santos - profile image
Irantzu Muerza Santos
Spain

Irantzu Muerza Santos is a severe asthma patient advocate from Spain. She is involved in ASMABI EUSKADI, an organisation which supports people living with asthma in the Basque Country, Spain and participates in a range of local and international projects to raise awareness of severe asthma.


Language options


The conference was held in English with subtitles.

We provided a live transcription service to allow attendees to follow the conference using subtitles in their own language. The following languages were available: Arabic, Bengali, Chinese (Simplified), Chinese (Traditional), Czech, Dutch, English, French, German, Hebrew, Hindi, Indonesian (Bahasa), Italian, Japanese, Korean, Polish, Portuguese, Romanian, Russian, Spanish, Swedish, Tagalog, Tamil, Thai, Turkish, Vietnamese.

 

Support ELF events


ELF does not charge for its events. We want to make sure they are available to anybody who wishes to join. To ensure we can keep doing this we ask that those who can afford to consider making a donation. We are grateful to everyone who supports us in this way and helps lung health patients to have their voices heard.

Working group


We want to say a special thanks to the working group who helped organise this event! Without them, this event would not have been possible.

Partners


This event is supported by SHARP, the Severe Heterogenous Asthma Research collaboration, Patient-centred, a Clinical Research Collaboration funded by the European Respiratory Society.

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