Our Patient Advisory Groups or PAGs are made up of people who have an interest in a particular lung condition or topic related to lung health. Members share their views and get involved in projects to help improve treatment and healthcare.
The Pulmonary Hypertension (PH) PAG was formed in 2023 and works to raise awareness of this condition to improve diagnosis, treatment and care. Their activities include developing information and resources, identifying patient and caregiver needs and inputting into ERS projects and activities.
More information on pulmonary hypertensionPAGs are set up to contribute to ELF and ERS priority-setting, and input into projects such as Task Forces and Clinical Research Collaborations (CRCs). PAGs may also contribute to other initiatives such as EU projects and ERS assemblies. Some PAGs may initiate their own patient-driven projects.
The group have been involved in a number of projects since setting up in 2023. Learn more about their activities here:
The annual ERS Congress can provide a number of opportunities for ELF PAGs. Pulmonary hypertension PAG members have played an important role in ensuring that patients have a platform and a voice at the event.
The Pulmonary Hypertension Question Time was an online webinar where pulmonary hypertension experts explored the key questions around the condition. Topics focussed on pulmonary hypertension causes, symptoms, treatments and clinical trials.
PAG members come together to share their experiences of living with the condition, including how it can affect daily life, thoughts on treatment and other areas of patient advocacy. The group meets every 6-8 weeks by video conference and communicates regularly via email. Meet our PAG members here.
Oksana Kulish Skåra is a mother and patient advocate for people living with pulmonary hypertension (PH).
Oksana is the head of the "Sister Delila" Foundation and the Pulmonary Hypertension Association of Ukraine (PHURDA). She is also a co-organiser of the Ukrainian Respiratory Coalition (URC) and actively supports people living with rare lung diseases by organising social care programmes. Oksana works alongside medical specialists to improve the quality of patients' lives and implement modern treatment methods.
Oksana is also a member of the PH working group at the Ministry of Health of Ukraine, where she develops policies to improve treatment conditions. As an ambassador of the European Patient Ambassador Program (EPAP), she raises awareness among patients and medical professionals in Ukraine and beyond and helps develop educational resources. Oksana has shared her experiences and those of other Ukrainian patients at international conferences, such as PHA, PHA Europe and the ERS Congress.
Pisana was diagnosed with idiopathic pulmonary hypertension (PH) in 1988 and received a double lung transplant in 2002. She co-founded the Italian Pulmonary Hypertension Association (AIPI OdV) in 2001, where she is currently President.
Since 2003, Pisana has advocated for patients and collaborated with different organisations, including the European Lung Foundation (ELF), where she is a member of the Pulmonary Hypertension Patient Advisory Group (PAG). Pisana has also co-authored the European clinical guidelines for pulmonary hypertension and is Secretary General of the Alliance for Pulmonary Hypertension (AfPH), a nonprofit organisation that unites PH associations across Europe.
Louise Bouman was diagnosed with pulmonary arterial hypertension (PAH) in 2008, after the birth of her second child.
Louise has worked in marketing for the pharmaceutical and medical industries throughout her career and despite her PAH diagnosis, she remained active in the healthcare community. In 2017, she joined the board of the Dutch PH Association, where she became president one year later. Louise has contributed to the planning of awareness campaigns and events for PH patients, by sharing information about the condition online.
Aside from this, Louise has completed courses in medical research, development and patient engagement and is a board member of the Alliance for Pulmonary Hypertension. She serves on different task forces and has presented the PH patient perspective at a range of events.
Eva has lived with Pulmonary Hypertension (PH) since 2003. She has worked as a laboratory assistant within medicine, where she also spent 10 years as a manager.
After her diagnosis, Eva has been keen to advocate for other people living with PH. She has been involved in training courses for patients and currently is the vice-president of PH Austria. Here, Eva supports patients living with PH and shares information about upcoming events.
Aside from this, Eva is a member of the Pulmonary Vascular Research Institute (PVRI) and the International Respiratory Coalition (IRC). She is also co-founder of the Austrian Respiratory Coalition (ARC) and member of the Scientific Advisory Board of the Excellence Cluster Cardio-Pulmonary Institute Gießen.
From November 2024, Eva will begin a new position as an advocacy manager for PHA Europe. She is keen to focus on improving PH awareness in countries where there is a lack of information about the condition.
Ciara is a Clinical Exercise Physiologist and an Assistant professor in Sport Science and Health with a commitment to the well-being of pulmonary hypertension (PH) patients for the past 6 years. As a representative for the Pulmonary Hypertension Association of Ireland, she combines her clinical expertise with a compassionate approach to patient advocacy, ensuring the voices, needs, and priorities of PH patients across Ireland are at the heart of her work.
In addition to her role in advocacy, Ciara has contributed significant research on understanding the lived experiences of PH patients and their needs. Her work examines patients' desires for more patient-centered care, addressing the physical, emotional and social needs. Through this, Ciara aims to contribute to patient-focused care models that enhance quality of life for patients and caregivers.
Driven by a desire to improve patient outcomes and amplify patient voices, Ciara aims to organise educational sessions, support groups and workshops in collaboration with healthcare providers and other advocates. Her background in clinical exercise physiology and research allows her to bridge the gap between medical science and patient-centered care and have an impact within the Irish PH community.
Zdenka lives in Croatia and has lived with pulmonary hypertension (PH) since the age of 7 years old. She works full time for a private company in Zagreb.
In 2015, Zdenka founded The Blue Wings Association, to help improve the quality of life for people living with PH. Zdenka is also a board member of PHA Europe and a member of the ELF PH PAG.
Alongside his involvement in the ELF PH PAG, Matt is the president and CEO of the Pulmonary Hypertension Association.
