#ACR23 Recap
As I leave #ACR23 in San Diego for another commitment with ASAE: The Center for Association Leadership in Baltimore, I am grateful for a wonderful few days with members of our amazing rheumatology and #scleroderma family from all over the world.
On Friday and Saturday, I had the opportunity to connect with many of our corporate partners to discuss the progress being made in scleroderma, and our shared commitment to serving people living with scleroderma. I am grateful to all of our partners for their presence at this meeting as well, and for sharing their commitment to #scleroderma in 2024 and beyond.
The meeting officially opened on Saturday with ACR President Dr. Doug White welcoming more than 12,000 participants from all around the globe to the meeting. He also recognized the 2023 Awards of Distinction honorees, which you can view here: https://rheumatology.org/acr-awards. It was wonderful to see some of our #scleroderma leaders honored on stage, including
The Scleroderma Clinical Trials Consortium met on Saturday, bringing together researchers and clinicians from all over the world to advance trials work in scleroderma. You can learn more about their work at?https://sclerodermaclinicaltrialsconsortium.org/.
We had the opportunity to present a poster on our work and mission to advance medical research, promote disease awareness and provide support and education for people living with scleroderma, their families and support networks. You can view our poster at https://bit.ly/ACR23ptposter. ???
Sunday, it was a packed house as the core group for the ACR Guidelines for Interstitial Lung Disease (ILD) were presented. These guidelines are intended to serve as a resource for clinicians who care for people with systemic autoimmune rheumatic disease who are at risk for or have been diagnosed with interstitial lung disease (ILD). The publication with the full background, methodology and recommendations is currently under review and is expected to be published in the spring. In the meantime, two summary documents – one for screening and monitoring and another for treatment are available at https://rheumatology.org/interstitial-lung-disease-guideline.
National Scleroderma Foundation is grateful for the opportunity to partner on this project to provide patient perspectives and participation in the development of these guidelines.
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There were so many terrific #scleroderma posters in the poster hall, and so wonderful to see so many of our investigators in person! ?
Dr. Puja Khanna moderated a terrific session with patients sharing their perspectives on managing their disease, and supporting one another on their journeys. Mary Alore, a peer mentor and health coach with the University of Michigan’s RENEW program was especially inspiring. The Foundation is honored to partner with UM on these important programs. You can learn more at?https://www.uofmhealth.org/conditions-treatments/rheumatology/peer-mentors-scleroderma.
I’m grateful there’s a patient perspectives track, AND I would love to see more healthcare professionals in the room for these talks to learn from those who are living with the diseases they diagnose, manage and treat. It’s such an important part of their professional development to spend time out of the clinic understanding patient priorities and perspectives.
There was a lot of buzz about the potential for CAR-T cell therapy at the meeting, and we have an educational session to help people living with scleroderma understand the clinical experience of this type of therapy, coming soon! Be sure you're signed up for our newsletter so you don't miss the announcement, and you can always visit scleroderma.org/calendar to register for our programs, which are free and open to the public. We also have an extensive catalog available on Youtube.
Tomorrow, Kate will participate in the “Meet the Funders” session and share information about our multi-million dollar investigator-initiated, peer-reviewed research grants program with attendees who are interested in finding support for their research. While applications closed this fall and are currently under peer review, you can sign up for alerts and learn more about our program at https://scleroderma.org/research. The next call for applications will be published in the spring. ?
My colleagues Angel and Kate are excited to meet those of you still on site at booth # 2842 and attend even more #scleroderma sessions today and tomorrow, including
It was wonderful to see so many of our National Scleroderma Foundation leaders and investigators, including Drs. John Varga , Virginia Steen , Rick Silver, Dinesh Khanna, Robert Spiera, Elana Bernstein, Marcy Bolster , Carrie Richardson , Liz Volkmann, Monique Hinchcliff , Jessica Farrell, PharmD , Ami Shah , Jessica Gordon, Flavia Castelino, M.D. , Ankoor Shah, and many others.
This conference is such a wonderful reminder of how special our community is. Our scleroderma healthcare teams devote their entire lives and careers to bettering the lives of those living with scleroderma, and it is so important that they have this time and space to connect and learn about the latest advances in research and clinical care. You can learn more about the meeting here: https://rheumatology.org/annual-meeting.
I am so grateful to be a part of this community, and continuously inspired by the incredible progress we are making in the field. National Scleroderma Foundation is proud to be the leading patient advocacy organization advancing #scleroderma research, education, awareness and support in the US. As #GivingTuesday approaches, I hope you'll consider supporting our work in #scleroderma at scleroderma.org/GivingTuesday.