Empowering Our Community Through the European Respiratory Patient Academy

In November, five advocates from CF Europe member organisations joined 42 participants from 23 countries at the European Respiratory Patient Academy—four intensive days focused on turning lived experience into policy change.

The Polish Society for the Fight Against Cystic Fibrosis, ASSOCIATION MUCOVISCIDOSIS Bulgaria, Slovak Cystic Fibrosis Association, Foundation Kolos (Germany), and Udruženje za cističnu fibrozu u BiH (Bosnia and Herzegovina) sent representatives ready to strengthen their advocacy skills and connect with peers across the respiratory community.

Day 1: The Power of Lived Experience

The Academy opened with a powerful message from EFA President Marcia Podestà: “Your lived experience isn’t just valuable—it is essential to shaping better research, care and policy across Europe.”

Sessions examined successful prevention campaigns—the Healthy Air Agreement, smoke-free generation movements—showing how evidence, patient stories and strategic alliances combine to shift policy. A session on stigma in respiratory diseases explored how discrimination layers and intersects, affecting both daily life and healthcare access. Group workshops brought everyone together to develop campaign concepts on air quality, prevention and stigma reduction.

Day 2: From Passion to Strategy

Roundtable discussions brought together perspectives on diagnostic delays, treatment access barriers and rehabilitation gaps across European countries. The same obstacles that affect asthma or pulmonary fibrosis patients appear in CF contexts too—reimbursement battles, fragmented care pathways, regional disparities.

Sessions on patient involvement in research stressed the importance of equipping patients with knowledge and confidence to contribute meaningfully to study design. And in a moment that captured the Academy’s collaborative spirit, trainees themselves led breathing exercises before working through real-world advocacy scenarios.

Days 3-4: Evidence, Systems and Leadership

Prof. Dr. Anne Marie Russell and Liam Galvin led workshops on interpreting scientific evidence, covering how to read clinical data and translate complex findings for different audiences. Healthcare system sessions mapped out decision-making processes: who sits at which tables, what arguments gain traction, why value frameworks matter in access negotiations.

Leadership and communication workshops provided frameworks for organisational strategy and stakeholder engagement—the mechanics behind sustained advocacy campaigns.

Beyond the Agenda

Between sessions, the informal moments proved just as valuable. Campaign concepts developed through spontaneous collaboration. Conversations continued over coffee as advocates from different countries exchanged insights on what works, what doesn’t and why.

These connections extend CF Europe’s reach within the respiratory field. The relationships built create natural opportunities for joint advocacy on shared priorities—air quality regulations, research funding, healthcare system reforms that affect multiple patient communities.

In Their Own Words

Selma Demirović, Udruženje za cističnu fibrozu u BiH (Bosnia and Herzegovina):

“The Academy in Prague was an exceptionally valuable experience for me. In addition to the wealth of knowledge and insights I gained through the lectures and sessions, I see the greatest value in the contacts I was able to establish. These meetings and exchanges with experts and fellow participants gave me a sense of connection and support, which is especially important considering the challenges we face in our country.

These connections are not only of professional benefit, but also provide personal strength and hope that through joint efforts we can drive change. I was inspired to see how much can be achieved when knowledge and experience are shared openly and with a genuine desire to help others.

I am grateful for the opportunity to be part of this program and I look forward to future meetings and collaboration.”

Lenka Prokopová, Slovak Cystic Fibrosis Association (Slovakia):

“First and foremost, I appreciate the initiative of EFA and partner organisations like CF Europe, who managed to create a meaningful and practical training for patient representatives and patient organisations.

The ERPA sessions truly resonated with me — meeting people from across Europe and various patient organisations was a powerful and unforgettable experience.

I felt truly honoured to take part in roundtable discussions with such inspiring people and collaboratively brainstorm topics discussed during the sessions — such as the stigma that comes with disease, case studies on air pollution and possible solutions, as well as how to understand research data and use it effectively in patient advocacy…”

Lyubomira Dimitrova Yordanova, ASSOCIATION MUCOVISCIDOSIS Bulgaria (Bulgaria):

“I truly agree with what Selma and Lenka have both written. I feel the same way. ERPA was first of all very inspiring and helpful for me as an attorney-at-law and wanna-be advocate. The Academy gave me a lot to think about and to concentrate efforts toward. I have now ideas to work on and to share with our team in Bulgaria. The future looks an idea brighter.

I gained a lot of expertise from all other participants, from the lecturers and especially from the organisers. I hope to use it in our daily activities at home.”

Magdalena Czerwińska-Wyraz, The Polish Society for the Fight Against Cystic Fibrosis (Poland):

“For me the European Respiratory Patient Academy on one hand was all about engagement, networking and cooperation and on the other hand a perfect learning platform that offered a great amount of knowledge and tools essential for patient organisations representatives in order to serve those in need. It was a wonderful place to meet passionate patient advocates from different countries, backgrounds and diseases who have the same goal – take on challenges and offer their time so that patients across Europe can have better access to health care, improved treatment and chance to receive therapies that meet their needs, no matter what the disease is.

As part of the CF community I know how important it is to build a coalition and work with facts and strong data but also to be a reliable spokesman and testimonial in order to ‘move the mountain’ and I am happy that these topics were covered during those four days. The Academy was a great platform to develop or strengthen competences of patient representatives so that we all can be committed, objective and effective advocates aimed at improving lives of our loved ones, initiate change or support activities that at the end of the day will improve the access to treatment and quality of care of patients with diverse respiratory conditions in Europe.

I am happy that I have met you all and I hope that there will be more chances to see one another in the future.”

Yuliya Bobza, Foundation Kolos (Germany):

“Thank you very much for the opportunity to take part in the Academy in Prague. It was a pleasure to meet new inspiring people and to see familiar faces again.

The program was rich and motivating. Hearing different approaches and experiences from colleagues across countries in the field of respiratory diseases was especially valuable. Some of the tools presented at the Academy are already being implemented in my team’s work.

I also truly appreciated the SMART planning session — it resonated with us, and we are now working on shaping our goals for the upcoming year.

The Academy gave me new ideas, motivation, and confidence that we are moving in the right direction. Many thanks to the organizers and all participants for the openness and exchange of experience.”

After the Academy

The five CF Europe representatives have returned to their organisations with expanded networks and refined approaches to long-standing challenges. The work continues—in Poland, Bulgaria, Slovakia, Germany and Bosnia and Herzegovina—building on what emerged during those four days in November.

Their reflections capture what makes programmes like the Academy vital: not just the formal curriculum, but the community built around shared purpose. The confidence gained through peer exchange. The practical tools already being applied. The hope that comes from knowing you’re not advocating alone.

CF Europe thanks the Academy organisers, Steering Committee members and our national organisations for their continued commitment to strengthening advocacy across Europe’s respiratory community.