As part of The Patient Voice segment of the 13th International Congress on Systemic Lupus Erythematosus, prominent lupus advocate Kathleen Arntsen discussed the importance of making sure those living with the disease are heard.
Known informally as Lupus 2019, the April 5-8 meeting in San Francisco, California, was themed “Gateway to the Future.” The event, which featured more than 60 speakers, highlighted major advancements and insights in systemic lupus erythematosus (SLE), precision medicine, and scientific presentations by young and mid-career investigators.
The meeting targets investigators, healthcare providers, clinicians, organization leaders, patients, and patient advocates.
“It was an honor to lead an interactive session on advocacy at the Lupus 2019 meeting where lupus advocates from around the world shared their amazing efforts to improve lives,” Arntsen said in a Lupus Research Alliance news story. “I am proud to be an advocate in the lupus community and stand alongside these incredible warriors.”
The Lupus Research Alliance, the world’s leading private funder of lupus research, lauded Arntsen’s participation on its website. A patient advocate for some 33 years, Arntsen is president and CEO of the Lupus and Allied Diseases Association (LADA), a non-profit organization dedicated to enhancing the lives of those affected by lupus and related disorders.
In addition, she coordinates the Lupus Agencies of New York State, represents patients for the Autoantibody Standardization Committee in Rheumatic and Related Disorders, and is a member of the Advancing Lupus Pillars for Health Advancement (ALPHA) project global advisory committee. She also was instrumental in establishing the Lupus Patient-Focused Drug Development initiative.
Titled “The Power of Advocacy to Improve Lives,” Arntsen’s talk was part of a larger discussion about patient advocacy initiatives. According to the Alliance, meeting organizers cited the session in closing remarks as one of the most popular.
“Advocacy is turning your emotion into motion and outrage into action,” she said at the meeting. Arntsen helps teach how to participate in all areas of advocacy, including healthcare, research, and regulatory and public policy.
“The wonderful thing about being an advocate is that you can make your voice heard from anyplace, including the comfort of your home, and you can even be in your sweats or pajamas,” she said. “Each of you has the power and the passion to make a difference through advocacy.”
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