In line with World Sarcoidosis Day on 13 April 2021, members of the ELF Sarcoidosis Patient Advisory Group (PAG) share their experiences of being a PAG member. Here you can hear from the PAG about their biggest achievements, what they hope to achieve in the future and what World Sarcoidosis Day means to them.
Representatives of several sarcoidosis patient organisations from around the world came together at the ERS International Congress in Amsterdam in 2015 to support patient involvement in a Task Force looking to update the 1999 sarcoidosis guidelines. From this point on, we decided to join forces and, together with ELF, we formed the Sarcoidosis PAG. Since then our PAG has steadily grown and now has 13 members from Austria, Bulgaria, Germany, Italy, the Netherlands, Serbia, Spain, Switzerland, Togo, UK and USA. Several members of our group also network with members of ERN-Lung and WASOG (World Association of Sarcoidosis and other Granulomatous Disorders).
Our time and energy is limited so we work together and learn from each other – by sharing experiences we broaden our understanding of what it is like for people with sarcoidosis in different countries. We want to advocate for patients to improve their situation by means which are not available for individual patients at the national level alone. Being part of the group also enriches and makes our work at the national level a lot easier while our sarcoidosis communities feel represented at an international level. By investing a little time and effort and letting the patient’s point of view be heard it is really worthwhile and we can make improvements in our condition in this way. The exchange of information is extremely important as some countries have very limited access to sarcoidosis specialists.
We want to communicate sarcoidosis patient priorities to doctors/healthcare providers and healthcare organisations and request their consideration with a common, international mandate. Although sarcoidosis patients mostly look well, sarcoidosis is a complex, multi-systemic rare disease that impacts each individual differently and we need doctors, family members, friends and our employers to understand more about how the condition can affect us. We also need reliable information provided in a way that we can understand and can base our decisions upon. We also need more patient-centred research into sarcoidosis.
Working with each other in the PAG is always a highlight throughout the year and we have formed great friendships between us. The sarcoidosis patient priorities project website (www.europeanlunginfo.org/sarcoidosis) is a milestone we can be proud of and developing a sarcoidosis factsheet and patient compass in different languages. We are also proud of having co-authored and published a number of articles in partnership with sarcoidosis researchers, including one on patient treatment outcomes and another on sarcoidosis and COVID-19.
The fact that we can work together, understand each other and achieve results is very satisfying, and we must keep on doing what we need to do including building a network for children and young people with sarcoidosis, keeping the website updated and promoting more education of pulmonary specialists about our condition. We want to continue to work on projects that can have a meaningful and positive impact on the lives of sarcoidosis patients and we hope to grow support and awareness so that no-one facing this complex condition feels isolated or alone.
Being part of a PAG improves the patient’s understanding of sarcoidosis, provides unique educational opportunities with global experts focused on their condition, and provides those living with the disease a supportive community to allow them to thrive even when confronted by challenging symptoms. We can share knowledge and expertise and it is an opportunity to raise the voice and perspective of the sarcoidosis patient community. When patients are united they are stronger and being part of a group to share and connect with other patients is extremely helpful. Sometimes it might seem like a lot of effort and time. Yes, sometimes it is, but the reward is far more satisfying.
It means the day that we, as sarcoidosis patients in every corner of this wide world, are one voice, it means awareness, it means visibility, it means not being alone. World Sarcoidosis Day is an opportunity for the global community to come together to honour and celebrate the sarcoidosis patient and caregiver community, clinicians and researchers dedicated to finding a cure. It is a day when we can really shout about the important work we do and share sarcoidosis patient experiences with the world.
We have Patient Advisory Groups covering a range of lung disease topics, many of which are currently welcoming new members.
