This month, members of the ELF Sarcoidosis Patient Advisory Group (PAG) travelled to Bari, Italy for the 4th National Congress on the Diagnosis and Treatment of Sarcoidosis. They share their key takeaways and why considering patient’s experience is important in research.
The 4th National Congress on the Diagnosis and Treatment of Sarcoidosis took place from 7–8 April in Bari, Italy, organised by Friends Against Sarcoidosis Italy (ACSI). It brought together national and international experts to discuss best practices to improve outcomes for people living with sarcoidosis.
The congress also provided a valuable platform for members of the ELF Sarcoidosis PAG to co-chair sessions, share insights with healthcare professionals and explore new opportunities for collaboration with fellow patient advocates.
“The 4th symposium on sarcoidosis focussed on best practices for diagnosing and treating the condition. For the doctors who attended the event, as well as for the speakers, clinicians, researchers and patient advocates, it was a great opportunity to learn about the progress in both clinical and research fields.” – Chris Knoet, Sarcoidose.nl
Sarcoidosis is a rare and often misunderstood condition, with many people unaware of its impact or that they have it. Patient advocacy plays an important role in ensuring timely and appropriate treatment for those affected.
At the conference, the ELF Sarcoidosis Patient Advisory Group (PAG) worked to amplify the patient voice, sharing key priorities directly with healthcare professionals. PAG member and ACSI President, Filippo Martone, delivered a powerful presentation on the unmet needs of people living with sarcoidosis in Europe, highlighting the urgent need to improve quality of life.
Other sessions at the event focused on:
In the final sessions, researchers and clinicians shared the latest developments in sarcoidosis research, leading to meaningful conversations with patient advocates who want to understand how these advances could shape future diagnosis and care.
On the final morning, the Patient’s Day offered people living with sarcoidosis the chance to meet healthcare professionals, ask questions, and explore topics that matter most to them.
“The 2025 conference in Bari showed me that there is still a lot to do before approved therapies reach patients, but that they are not too far away. As a patient representative living with sarcoidosis, it is an honour for me to see researchers addressing this topic through projects. This gives me hope that there are many capable people who are fully committed to improving our quality of life.” – Katja Schillhorn, Sarcoidosis Self-help Group Schleswig-Holstein
The ELF Sarcoidosis PAG hopes that this increased knowledge will contribute to better care and quality of life for patients in the future.
“I am delighted to see the motivation of the doctors to continue research in this disease area. I know that these advances will have a significant benefit for sarcoidosis patients worldwide.” – Rafael Cano Bernardo Del Queros, National Association of Sarcoidosis Patients Spain
