Episode 68: Rant Ahead! Together We Can Make Change

In this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting.

We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, sometimes it's just necessary. 

Tiffany introduces two issues that are directly related to ranting. The first builds on years of wanting for Patient Organizations to be more accepted and involved at American College of Rheumatology (ACR) annual conventions.

Are you affiliated with a Patient Organization - anywhere in the world - part of the rheumatic or musculoskeletal disease community and interested in uniting with other groups so, together, we can work towards more inclusion in future ACR meetings? Then CLICK HERE to sign on. OR, if you are affiliated with a research collaborative group (research institute, databank, government) and would like to sign on to support increased Patient Organization participation in future conferences, you are also invited to sign.  SIGNATURES REQUIRED NO LATER THAN DECEMBER 15TH, 2021!

A letter just for patients who want to have a voice in future advancement of a Patient Track at future meetings - this will be available in January 2022!

Then, Tiffany introduces a new initiative at AiArthritis - Caution: Rant Ahead! Realizing there is no where in our community for people affected with AiArthritis diseases to vent privately, we started a venting platform. Submit your rant, which will not be visible to others outside of our organization. Submit anonymous or leave your name and email, it's up to you. Rants submitted may be discussed on future episodes of this show, on social media, or if enough patients rant about the same issue then maybe even a project! Submit your own rant here: https://www.aiarthritis.org/rant 

 

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 68: RANT AHEAD! Together We Cannot Fail

00:52 - Tiffany welcomes listeners.

01:06 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis.

05:28 - One of the programs we have at AiArthritis is “Go With Us to Conferences” which is an initiative to bring patients with us to the two major scientific conferences we attend every year:  ACR (American College of Rheumatology Annual Conference) and EULAR (European Alliance of Associations for Rheumatology).

07:20 - This year when Tiffany registered the team attending for 2021, she was annoyed that there was no pass option for Patient Organizations.

09:28 - AiArthritis did not want to attend as sponsors of a booth as we have in past years because our team cannot attend the sessions if they are working a booth.

12:10 - ACR offered passes only for individual rheumatology professionals and members of the press.

14:08 - ACR has an extensive list of individuals who should be members, but patients, patient representatives, and patient organizations are not included on the list.

15:09 - Tiffany made a post on Facebook about her frustrations that patient organizations are excluded from the ACR Annual Conference and Membership.

15:23 - The post received a lot of attention from other patient organizations and patient advocates who have also experienced feeling unwelcome by the ACR.

15:44 - The ACR contacted Tiffany and scheduled a meeting to discuss her concerns.

17:00 - ACR has agreed to include patient representatives and patient organizations in membership and registration options moving forward.

19:52 - There is an open letter other patient organizations can sign on or before December 15, 2021.

21:18 - A letter for patient representatives will be available in January of 2022.

21:34 - You can find all the sign-on letters at aiarthritis.org/ACR

21:43 - This experience led to the realization that patients need a place to rant about issues they are facing in the AiArthritis community.

22:18 - AiArthritis is adding a button on our website that patients can use to rant or vent privately about problems they are having without judgement.

22:37 - Topics that receive the most traffic via this button will become show topics and organizational initiatives.

23:11 - This feature can also be found at aiarthritis.org/rant.

23:27 - Find us on the web at aiarthritis.org or @IFAiArthritis on all social media platforms.

 

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