Editorial by President of EU-IPFF Steve Jones
In 2020 EU-IPFF had planned to hold the 1st ever European Pulmonary Fibrosis Patients Summit in Warsaw, Poland. Unfortunately, we had to cancel the event at short notice due to the COVID-19 pandemic. Since then, we have monitored the COVID-19 situation carefully and have decided to hold the Summit as an on-line event in 2021.
On 23rd-25th of April 2021 we will open the virtual doors to our Summit. We have many speakers confirmed and sessions covering three tracks on Research, Person-Centered Care and Policy and Advocacy. There will be presentations, panel discussions and roundtables and a special conference website, where all attendees can have an individual log-in and profile. Participants can choose which sessions to attend and which people to meet in the virtual conference room and registration is free to all.
In the lead-up to the Summit, we arranged four webinars covering the important topics of: Optimising the quality of life for pulmonary fibrosis patients, Genetics of ILD, Progressive pulmonary fibrosis and co-morbidities, and Pulmonary fibrosis and COVID-19. These were well attended with great Q&A sessions, which bodes well for the Summit.
The Summit takes place at a time when the pulmonary fibrosis community faces the difficult challenge of raising awareness of the disease with the public and health care professionals. The pandemic has made governments everywhere think more about respiratory disease and consult respiratory clinicians and patient organisations for advice, expertise, and support. While this overdue recognition of lung health is welcome, we need to focus policy makers’ attention on the specific problems facing the 300,000 people across Europe living with pulmonary fibrosis. Our disease is not the same as asthma or COPD. Progressive pulmonary fibrosis has a worse prognosis than most common cancers, but we do not receive anything like the same level of support and care. While most cancer patients are diagnosed and start treatment in a few months, this is not the case for pulmonary fibrosis patients, who often must wait a year or more. Also, pulmonary fibrosis patients are especially at risk from COVID-19 and should be made a high priority for vaccination. There are many issues to discuss at the Summit!
We look forward to welcoming you from April 23rd to 25th together with the 300+ other people who are expected to attend.
I would like to take this opportunity to thank our many speakers and panelists for sharing their expertise and experience with us at the Summit and the many people who have submitted posters and abstracts. Finally, I would like to thank everyone involved in the organising this landmark Summit for their enthusiasm and help. I am sure it is going to be a great success!