AiArthritis Voices 360 Talk Show
Education
Episode Description
Welcome to the first episode of AiArthritis Voice 360. This episode, join your host, Tiffany, as she introduces her mission at the International Foundation for Autoimmune and Autoinflammatory Arthritis, which is all about championing the voices of patients to solve the problems most affecting those diagnosed with AiArthritis diseases. This week she is joined by Kelly Conway, IFAA co-founder, to talk about their experience of being Mystery Patients and to share their diagnosis story. The route to diagnosis and treatment is often long and complicated.
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!
Show Notes: Episode 1 – “Mystery Patient”
00:55 – Meet show host, Tiffany
01:10 – Tiffany's Diagnosis
01:45 – AiAVoices 360 Podcast Mission Statement
02:21 – Welcome Co-host Kelly
03:10 – History of Founding of International Foundation for Autoimmune &
Autoinflammatory Arthritis (IFAA)
03:34 – Tiffany's Mystery Patient Story
08:25 – How did Tiffany and Kelly Meet?
09:25 – IFAA begins as a Movement
11:52 – How a Movement Became a Foundation
13:20 – Kelly's Mystery Patient Story
26:55 – IFAA is a growing/evolving organization
30:00 – Plans for the Podcast moving forward (Weekly episode, breakouts, etc)
30:55 – Mystery Patients (no correlation between lab values and symptoms) and "must
be stress" assumption
32:45 – How will the podcast serve as a resource for patients
33:44 – Invitation to submit questions and comments by visiting
aiarthritis.org/podcast, especially Your Diagnosis Story
36:11 – Tiffany thanks listeners for tuning in
36:40 – Invitation to be co-host or guest on show by visiting aiarthritis.org/podcast
37:14 – Invitation to follow IFAA on social media
37:23 – Invitation to follow Kelly's blog "As My Joints Turn" at
https://asmyjointsturn.com/or on FB and Twitter
38:00 – Invitation to join other patients on AiArthritis Voices, a private forum for
patients only run by IFAA. (aiarthritisvoices.org) LAUNCHING SOON!
39:15 – Future plans: taking the podcast on the road!
40:20 – Invitation to support the podcast (details on aiarthritis.org/podcast and aiarthritis.org/VIP)
40:47 – Closing
At The Table Ep 15 Shared Decision Making Tools to Advance Precision Medicine: Get Involved!
Episode 15 Internalized Ableism - Finding Your Freedom to Participate in Life
At The Table Ep 14 When our past impacts our present - the office visit
Rheumy Rounds™ Pilot Episode Episode 14: Office Visit Communication Obstacles
At The Table Ep 13 Rheumy Rounds Break Out Minisode: Social support research and the importance of being heard
Episode 13 Rheumy Rounds Pilot Episode: Office Visit Communication Obstacles
At The Table Ep 12 Intro to Rheumy Rounds: Patients & Rheumies Unite!
Ep 12 Invisible Impact: AiArthritis Diseases
At The Table Ep 11 Bruised on the Inside
Oh Mama! Special Series Episode 1 - Pregnancy Planning with a Chronic Illness
At The Table Ep 10 Life of a Biologic
Episode 10 Patients Weigh In: Why the ‘Right‘ Diagnosis Name Matters w/ Charis Hill
At The Table Ep 9 Personalized vs. Precision Medicine: The right term matters!
Episode 9 Changing the world with your knee - investing in our future
At The Table Ep 8 Brain Fog
Episode 8 Where can patients use their voice to impact change? EVERYWHERE!
At The Table Ep 7 2020 Resolutions: Let‘s Do This Together!
Episode 7 End of Year Review
At The Table Ep 6 Best Gift
Episode 6 Diagnosis STAT!
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