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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Thursday Nov 07, 2019
Thursday Nov 07, 2019
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.
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
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awesome
Friday Mar 27, 2020
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