The Sjögren’s Foundation was excited to be on the front lines during the International
Symposium on Sjögren’s (ISSS), held in Rome, Italy, September 7-10! This event marks the one time that ALL healthcare professionals (HCPs) from different specialties, researchers, industry, government agencies, and patient leaders gather together to hear the latest information on Sjögren’s and engage in discussions around current issues in research and management and treatment.
The Foundation’s CEO, Janet Church, Vice President of Medical and Scientific Affairs, Kathy Hammitt, Director of Research and Scientific Affairs, Matt Makara, and many of our Medical and Scientific Advisory Council members participated in the programs and interacted with key international leaders in Sjögren’s. Presentations included sessions on pathogenesis, lessons learned from the association with and overlap of Sjögren’s with other autoimmune diseases, the need for multi-specialty collaborative care, patient stratification for better clinical management and more successful clinical trials, the debate on lip biopsies versus salivary gland ultrasound, lymphoproliferation – what this means for patients and how it is best monitored, evolving topics in new therapies and health policies, international cooperation, and improving knowledge and patient care through the use of new technology and partnerships between HCPs and engineers.
Language matters! We brought our Foundation’s dialogue about nomenclature to Italy. A full session was devoted to this critical topic, with our Foundation’s Medical and Scientific Advisory Council Chair, Dr. Alan Baer, leading the charge for us and partnering with Dr. Manuel Ramos Casals of Barcelona to take the discussion to the international stage. After gathering input from patients on all continents, Kathy Hammitt, a patient herself, conveyed the patient view on why some words are denigrating and make our lives harder while a change in the words we use can lift us up and help validate our experiences. WE know that words used to define and describe our disease have repercussions for all stakeholders and especially patients. Hammitt serves on the Steering Committee of this international initiative, and our Foundation’s voice will stay strong as we work to garner consensus on behalf of all patients around the world.
The Foundation presented three posters focused on our Living with Sjögren’s national patient survey, our survey on COVID-19 and Sjögren’s, and our clinical practice guidelines initiative. In addition, Foundation staff are authors on six more posters, bringing our visibility to an all-time high of nine posters with Foundation involvement. And finally, our own Foundation’s Hammitt was invited to speak on patient needs and how a patient advocacy organization such as ours can play a significant role in transforming the outlook for our disease by communicating the wide array of burdensome symptoms, educating healthcare practitioners (HPCs) who might see a Sjögren’s patient, increasing corporate interest in Sjögren’s so that new therapies are developed, ensuring good clinical trial design so therapies have a chance to make it to market, bringing all stakeholders together so the voices of HCPs and patients everywhere join in unison to produce a clear and broadly heard message, driving change in health policies to relieve patient cost burdens and increasing recognition that Sjögren’s is systemic, serious, and prevalent!
We are proud to be a part of this gathering of the International Sjögren’s Network, made up of leaders from international patient groups. This special event provides us with an opportunity to learn from one another and create a shared vision so that patients everywhere move forward together to tackle patient needs.
The ISSS brings unique opportunities for us with the Sjögren’s Foundation to engage in high level discussions with leaders from around the world in healthcare management, research, and industry so that together, we change the face of Sjögren’s and create a better future for all of us.