Part of our "Go with Us! to Conferences"/EULAR2021 Series
AiArthritis Voices 360 Full Episode 62
Air Date: June 6, 2021
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Katie are the core team members attending the conference, but as part of our "Go with Us! to Conferences" program, we have invited three patients to be part of the experience, too! Joining us for this debrief are Patrice Johnson and Leslie Welsbacher. Patients are one of three pillars of EULAR (researchers and medical professionals make up the other two) and are encouraged to attend and participate in the annual conference. So here we come!
Formerly known as the European League Against Rheumatism, the organization is now called European Alliance of Associations for Rheumatology (EULAR) and is in the midst of hosting their annual conference online for the second consecutive year due to the COVID-19 pandemic. Our first review covers emerging conference themes (inflammation as an umbrella, comorbidities and "multi-morbidities") and covers featured recommendations for disease management.
Whether in person, or attending online, our organization always attends, then does patient-led video debriefs - highlighting lessons learned from sessions and reporting back what is new in research. But we don't just tell you what we learned, we invite you to learn with us. So we invite you to get comfy on your couch with a glass of your preferred beverage, pretend we are all together in Paris (intended location of the conference before it was moved to the virtual platform), and enjoy our debrief of this first round of sessions. Then head over to our YouTube Channel or online patient platform to learn even more!
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
This "Go with Us" to EULAR video series continues...visit the playlist on our YouTube Channel:
Now it's YOUR TURN to join the conversation!
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our program where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the
AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Patient Voices and All Other Stakeholders - Join our
AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).
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Show Notes:
Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
Deb Constien
Diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) at age 12 and recently found a new home at AiArthritis as Senior Program & Communications Manager. She earned a Masters of Public Administration, nonprofit management concentration, from Oakland University in Rochester, Michigan.
Guest: Leslie Rott Welsbacher
Leslie Rott Welsbacher has a Master’s degree and PhD in Sociology from the University of Michigan, and a Master’s degree in Health Advocacy from Sarah Lawrence College. She was diagnosed with lupus and rheumatoid arthritis in 2008, at the age of 22. She is a blogger, e-patient, health activist, patient advocate, healthcare disruptor, sociologist, and writer. She authors the blog Getting Closer to Myself and has contributed to a variety of other health-related sites, including CreakyJoints, Health Central, Health Line, Lupus News Today, Mango Health, and Rheumatoidarthritis.net. Leslie’s story has been featured in the U.S. Pain Foundation Invisible Project: RA/RD Edition, Women’s Health magazine (twice!), Real Life Diaries: Living with Rheumatic Diseases, and on a jacket, “Double Major,” that she proudly wears as a member of the Walking Gallery of Healthcare. Previously, Leslie has worked at the Hospital for Special Surgery, the Partnership for Palliative Care, and the Global Healthy Living Foundation. She currently works as the Compliance & Experience Officer at a community healthcare company in Royal Oak, Michigan.
Blog:
Getting Closer to Myself
Every year we attend the two major rheumatology scientific conferences and we invite YOU to 'go with us'! Learn, ask questions, and enjoy a one-of-a-kind, patient-led experience!
Click here to view the Youtube playlist of the EULAR 2020 videos
Click here to listen to episode 3 where Tiffany, and special guest Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases, as they discuss the distinction between these two sides of the immune system, and the diseases that stem from them.
Click here to listen to episode 9 where Tiffany and Deb speak with Dr. Aurélie Najm who is working on research teams to collect and analyze synovial tissue samples from Rheumatoid Arthritis (RA) so patients can be connected to the right treatments at the right time.
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