AiArthritis Voices 360 Talk Show

Episode 41: Biomarkers - DIagnosis, Disease Management, & even PREVENTION?!

This week, Tiffany and Patrice discuss the importance of biomarkers. Do biomarkers hold the key to understanding disease severity and predicting disease onset?

 

In this episode, we talk about biomarkers, or a measurable indicator present in the blood or tissues, and how their presence in our bodies can predict disease severity and guide treatment development. Furthermore, evidence that identifying biomarkers early - BEFORE DISEASE ONSET - could actually prevent a person from developing the disease.  Now, there is still the environmental plus genetic factors to consider, but the findings are promising. 

 

While the research focuses on Rheumatoid Arthritis (RA), showing how those who are sero-positive - in addition to having other genetic biomarkers - have a higher likelihood of developing severe disease and bone erosion,  Tiffany points out this is similar to Axial Spondyloarthritis, where many of those with non-radiographic disease do not have the biologic HLA-B27 gene that is present in most with radiographic evidence.  

 

The bottom line is that learning about biomarkers can help patients navigate their own healthcare journey, but also could possibly prevent their loved ones from developing these diseases in the future. 

 

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.

JOIN TODAY!

 

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).

 

AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org. 

Episode 40 Research at a Glance - Posters & Abstracts: Patient reviewers, here we come!

Today Tiffany talks about Posters & Abstracts, or summaries of research, thousands published annually just within the rheumatology community. So, unless the poster is featured in a session, attendees must search the poster database to learn about recent, current, or ongoing research that may be of importance to know.

As we continue our tour of the EULAR scientific conference*, we are inviting patients from around the world to join our team in patient-led Poster/Abstract research reviews. During today's show, Tiffany simulates the simplicity of viewing this short research summary and the value associated with patients (and patient organizations) who are privy about current research efforts.

Poster/Abstract selected for review: Evolving the Management of RA (eRA) program: Educational tools to support daily practice (of rheumatologists)

Listen to the episode to hear the review and to get involved with AiArthritis in expanding research within the patient community!

 

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.

JOIN TODAY!

 

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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*Since June, our team has been learning from the research presented at the European League Against Rheumatism (EULAR) 2020 annual scientific e-Congress ... and we are inviting those diagnosed with our diseases - and parents of juvenile patients - to join us!  Live and online research reviews, watch parties, and more. Sign up today by joining https://aiarthritisvoices.org  or learn more at https://www.aiarthritis.org/go-with-us-to-eular-2020. 

 

To learn about RheumyRounds, the break out pilot series for this Talk Show that unites the patient and rheumatology professional "at the table" as equals in conversations that solve problems to improve communication and community outcomes. Want to get involved with RheumyRounds? Learn more at https://www.aiarthritis.org/rheumyrounds. 

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AiArthritis Voices 360 is the official Talk Show of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our mission to help others, like us, affected by AiArthritis diseases, have a voice alongside other stakeholders as equals, so together we can solve the problems that impact education, advocacy, and research. 

 

Donate

Please consider donating so we can continue the work we do to bring you this show, as well as all the other projects we do at our organization. Thank you in advance for your support! DONATE

Episode 39: Patient Engagement in Research: the OMERACT Experience

This week Tiffany (axial spondyloarthritis) and Deb (rheumatoid arthritis) talk about their experiences - and which could be YOUR experiences - having your voice count in research initiatives. 

 

New primary outcomes (endpoints that should be measured) in rheumatology trials where shared-decision making between doctors and patients are required...and patients were part of this historic decision. This was part of the international, collaborative of rheumatology stakeholders - OMERACT (Outcome Measures in Rheumatology).... and Deb and Tiffany were there and they want to tell you all about it!

 

Learn more about OMERACT.

 

AiArthritis projects referenced in this episode:

• Preparing Patients for Precision Medicine Trials (which includes development of a Shared Decision Making Tool). Learn more.
• Changing the World with Your Knee - our collaboration with researchers on the OMERACT Synovial Tissue group where we facilitate focus groups with patients to learn what they need to understand about these studies, which include participating in voluntary knee biopsies, in order to want to be part of the study. Learn more.

 

Pull up a seat - it's your turn at the table!

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis).

 

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.

JOIN TODAY!

 

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).

 

Donate Today!  Thank you for your continued support of this show. If you would like to give to our cause, so all patients globally always have a seat "at the table", your gift would be appreciated.  Give today!

 

 

Episode 38: EULAR Debrief Treat to Target

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. 

 

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.

JOIN TODAY!

 

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).

Episode 37: Patient? Nonprofit? Researcher? Healthcare Services? You‘re invited to an experience that can change our future.

We don't represent patient voices, we are the patient voices. We work hard to ensure ALL voices - not just a small percentage of select patients - are counted. And now we have the platforms in place to include everyone's voice who diagnosed with AiArthritis diseases - regardless of geography or disease limitations. We also have the tools and professional experience to bridge the patient conversation with other stakeholders (doctors, nurses, researchers, legislators, drug manufacturers, non-pharmacologic companies, etc) so, together as equals, we can solve the most pressing community problems.

 

It's finally ready! Two years in the works, but now the communication platforms, led by expert patient facilitators, are in place.  An online site, called AiArthritis Voices, will tie in our online conversations, YouTube channel, live "tours", and educational gatherings) with all the topics we cover on our AiArthritis Voices 360 Talk Show. Those diagnosed with, suspected of having an AiArthritis disease, or the parent of a juvenile patient may join this private online site. There you can Talk, Learn, and Connect with many opportunities to improve your own health journey and to help millions of others like you.

 

Other stakeholders can join as Engagement Partners, who we work with to improve the outcomes of our projects. In turn, we develop solutions with a higher impact to our community. 

 

 

Listen to this episode to learn more about how our NEW AiArthritis Voices online platform will work in conjunction with this AiArthritis Voices 360 Talk Show to give YOU a voice. In turn, together, we will solve the most pressing issues that will impact education, advocacy, and research. 

 

Learn more about AiArthritis Voices online site at https://aiarthritisvoices.org.

 

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.

JOIN TODAY!

 

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).

Episode 36: Preparing Patients for Precision Medicine - Collaboration with the Rheumatology Nurses Society

Welcome to AiArthritis Voices 360, the official Talk Show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). 

 

In this episode, Event Host, AiArthritis CEO and person living with AiArthritis diseases, Tiffany Westrich-Robertson, is joined by patient Co-Host, Katie Steele. They speak with Carrie Beach, RN, from the Rheumatology Nurses Society (RNS) about our collaboration to improve patient voices in education and research (featuring our award-finalist Preparing Patients for Precision Medicine project).  This is an excellent example of how patients and rheumatology professionals sit "at the table" to discuss projects - because during the conversation we actually came up with a new spin on the collaboration!  Listen to learn more about our work together to increase patient (and nurse) education about precision medicine and how YOU can join us!

 

We also start the episode discussing the patient-nurse relationship and how that window of opportunity while we have the nurses' ear could be better utilized.

 

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.

JOIN TODAY!

 

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).

 

 

Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode is an excerpt from one of those episodes.  

 

 

Love the show?  Please consider donating so we can continue bringing this amazing resource to you! DONATE TODAY

Episode 35: ORIGINAL EPISODE REPLACED - AUTO Ball Honorary Chair, Angela Durazo: Shifting Gears - Turning Pain into Power

While we asked Ms. Durazo if we could keep this resource for you to help navigate your challenges with invisible disease, she declined, stating the contract to use the Angela Durazo brand was only agreed upon for a one year term.

You can find several other invisible disease episodes and associated conversations to join!  We have connected this show space with a previous episode on invisible disease.

 

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.

JOIN TODAY!

 

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).

Episode 34: EULAR 2020 e-Congress Debrief - Treatment recommendations, adherence, cardiovascular comorbidities & more

Welcome to AiArthritis Voices 360 - the talk show hosted by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), whose mission is to help others, like us, living with AiArthritis diseases, have a voice "at the table" alongside other stakeholders as equals, to solve problems that impact education, advocacy, and research. 

 

This week Tiffany, Deb, and Patrice are learning while having a great time as they have been "at EULAR 2020", which was supposed to take place in Germany June 3-6, but is now ONLINE - through September 1st.  In this debrief, which is the third of four, cover the following:

1. Award-winning abstracts - focus on working with rheumatic diseases, gut health. We talk in detail about our opinions as patients and focus on some specific projects at AiArthritis related to this topic.
2. Patient issues with adherences to treatments: fears, side effects, pregnancy, age - interesting research! We delve more into pregnancy and age in particular - especially regarding current research that moms can be on biologics during pregnancy and the difference in those with long term disease and early on refusing to start treatments.
3. Cardiovascular: It's not just RA, research for PsA, Axial Spondyloarthritis and others. These diseases ARE full body! Make sure you remember to take care of the whole body.
4. EULAR 2020 Recommendations: New RA and PsA treatment guidelines, involving young people in voicing personal therapeutic outcomes interest (i.e. school, work, relationships, socializing), personalized vs precision medicine, shared-decision making, and patient concerns to address for injection therapy (steroid shots, etc).

 

The team will take all the information they are learning this month and open the conversation up to YOU in July. Want to "go with us" to EULAR in July? Sign up to learn more HERE.

 

About Us. To learn more about our nonprofit, please visit www.aiarthritis.org.

Donate. Want to give us a High Five, or two? Your support is vital to helping us continue our work to improve the lives of people living with AiArthritis diseases. Your generosity is appreciated! GIVE TODAY

 

 

Related Talk Show episodes:

• Synovial Tissue project: Episode 9 
• Precision Medicine vs Personalized Medicine: Mini-Episode 9
• Special Series - COVID-19 & AiArthritis: https://www.aiarthritis.org/covid19 
• Episode on pregnancy & research with Mariah Leach from Mama's Facing Forward & Linette Dyer from Mother to Baby: Episode 11
• Shared Decision Making and Precision Medicine: Mini-Episode 15

Related Projects:

• Our Accumulator/Working with lack of biologics project: https://www.aiarthritis.org/accumulator 
• Our Preparing Patients for Precision Medicine education and research project GET INVOLVED: https://www.aiarthritis.org/precision... 

 

Want to watch the raw footage of our team recording this episode? Visit: https://youtu.be/ypw5kAW3AyU While there you can view the first two debriefs and learn more how YOU can attend conferences "with us".

 

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.

JOIN TODAY!

 

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).

 

At The Table Episode 29: From Mini to Mega- Expanding the Table

Welcome to AiArthritis Voices 360 At The Table. For our final Wednesday minisode, we have important news to share as we re-structure our podcast to expand our platform to appeal to all potential patients...and so, in turn, more voices can be "at the table". Tune in to learn more about this exciting transformation!

 

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.

 

JOIN TODAY!

 

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).

 

Be sure to check out our top-rated show on  Feedspot!

Episode 33: You‘ll always be my baby- lessons from dad

In this episode, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) reflects on her choices about motherhood. While she never felt the "mother bug" to have children of her own, failed relationships led her on the path to dedicate her life to her career - and ultimately she "birthed" this organization. 

Like a parent, she has given her heart and soul into its' development over these 9 years and is proud of the accomplishments she and the other patient leaders have achieved. But she also knows her work as a parent is not over, as there is still a lot of work to do to make sure it succeeds and continues to change lives well after she is gone. Like all children, they need financial support to thrive, to grow, to continue to develop, so she is calling on the public to help make that happen with a donation. 

Tiffany ends the episode by thanking her own dad for genetically passing down his business savvy and for being a great example of what it takes to be a parent. 

Donate Today!

 

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.

JOIN TODAY!

 

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).