New York – December 8, 2020 – This information is from the Relapsing Polychondritis Foundation Inc. with Race for RP and is not sponsored by, nor a part of, the American College of Rheumatology.
The American College of Rheumatology (ACR) held its annual meeting, ACR Convergence 2020, on November 5-9th. The all-virtual meeting included clinical and basic science symposia, notable speakers such as Dr. Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases, a virtual exhibit hall, and patient perspective posters and presentations authored by individuals with rheumatic disease.
This year’s annual meeting also featured five relapsing polychondritis patient poster submissions that were selected for presentation. Four of the posters were sponsored by the Relapsing Polychondritis Foundation and one poster was sponsored by the Canadian Society for Relapsing Polychondritis.
“Poster presentations like these are an important part of our efforts”, said David Bammert, President of the RP Foundation. “They provide the opportunity for the medical community to better understand the patient’s perspective regarding living with RP and facilitate pathways for more efficient patient care.”
Nancy Linn presented her poster, Connecting Rheumatology Professionals & Thought Leaders Inspired the Creation of a New Program Focused on Relapsing Polychondritis, a Rare Rheumatic Disease, outlining the ideation and establishment of the Penn RP Fund, a research initiative and partnership between the University of Pennsylvania RP Program and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC) made possible by relationships fostered at previous ACR meetings and other similar gatherings of clinicians, researchers, patients, and advocates.
Isabel Bautista’s poster, Patients With Relapsing Polychondritis and an Advocate Manufactured Custom Cloth Masks to Combat COVID-19: This Mask Project Provided a Sense of Purpose, Created Unity, Increased Awareness of RP, Facilitated Research, and Generated Hope, detailed the story of her team of RP patients who helped patients across the globe by making and distributing free masks and ear savers to protect them from COVID-19 during the pandemic. Ms. Bautisa was one of only four patients selected to present her poster to ACR attendees.
With Coping Through Advocacy – My Story Living With Relapsing Polychondritis, Allegonda Imeson shared her story about founding the Canadian Society for Relapsing Polychondritis as a means of spreading awareness about the disease and supporting patients, including herself.
Tedi LaMere’s presentation of My Multidisciplinary Healthcare Team and Patient Advocacy Groups Saved My Life followed her RP story from onset to diagnosis and treatment and revealed how through the help of Friends of Patients, NIH specialists were able to identify and address several life-threatening conditions she faced.
Dan Smith’s poster, Only in My Dreams Can I Do the Things I Used To Do: Where There is Research There is Hope, illustrated the positive impacts of finding a support group and new creative pursuits to promote well-being.
While each poster highlights different aspects of patient engagement, intervention, and self-management of this rare disease, an overarching theme of collaboration and partnership emerged. As they worked hard to find purpose and find ways to cope with their illness, the patient-presenters sought out community and support and became relapsing polychondritis and autoimmune disease advocates actively engaged in helping other patients, promoting increased awareness, and pushing for greater research – each in their own way – resulting in improved quality of life for many.
“We were honored to have so many RP patients represented and encouraged by the progress of the research, which was presented to 16,000 attendees. ACR did an outstanding job facilitating this exciting and informative forum,” said David DeRosa, Secretary / Treasurer of the RP Foundation.
Additional information regarding ACR Convergence 2020 Patient Perspective Poster Educational Sessions and Oral Abstracts can be found here.
About Relapsing Polychondritis
Relapsing polychondritis (RP) is a debilitating and sometimes fatal systemic inflammatory disease that is characterized by recurrent inflammation of cartilage and other tissues throughout the body. The disease affects multiple organs, particularly cartilaginous structures such as the ears, nose, airways and joints as well as eyes, skin, heart valves and brain. The cause of RP is unknown and there is no cure for RP. For more information, visit https://bit.ly/RP_Poster.
About Relapsing Polychondritis Foundation
The RP Foundation’s purpose is to facilitate education, awareness and research initiatives that improve the quality of life for patients with RP. For more information, visit https://polychondritis.org.
About Race for RP
Race for RP supports research and awareness programs for relapsing polychondritis and related diseases. For more information, visit www.RaceforRP.org or www.facebook.com/raceforrp/. Follow Race for RP on Instagram, @RaceforRP.
Presenting Author: Nancy A. Linn
Presenting Author: Isabel Bautista
Presenting Author: Dan Smith
Presenting Author: Tedi LaMere
Presenting Author: Allegonda Imeson