FDA Public Meeting Opportunity - Patients "at the table"
AiArthritis Voices 360 Full Episode 53
Air Date: January 10, 2021
This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis patient community. This means sometimes we send representatives to participate in events hosted by regulatory agencies like the FDA or the European Medicines Agency. In this episode, Danielle will explain how you can get involved in this meeting and how you can participate in future opportunities.
After listening to the episode, if you would like to view the FDA safety Communications about medical devices or any other products, or give feedback on the safety communications discussed in this episode, please visit FDA Public Comment by January 19, 2021.
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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!
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The AiArthritis Voices Program
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.
Show Notes:
00:53 - Danielle welcomes listeners
01:05 - Danielle is a patient living with Rheumatoid Arthritis and Axial Spondyloarthritis
01:34 - Today’s episode is about Danielle’s experience participating as a panelist in a public meeting for the American Food and Drug Administration (FDA) about safety communications regarding medical devices
02:08 - AiArthritis seeks to center the patient voice in all conversations in the medical community that impact patients living with AiArthritis Diseases
02:21 - AiArthritis patients often use both implanted and assistive medical devices
03:39 - AiArthritis will use AiArthritis Voices to put stakeholders in touch with volunteers who are interested in participating in things like conferences, public meetings, and other events
05:34 - Danielle talks about the experience of participating as an equal stakeholder and encourages other patients to get involved
09:03 - AiArthritis was the only organization that sent a representative to speak for adult patients at the FDA meeting
09:18 - Danielle explains the purpose of the meeting and what types of information the FDA is seeking
12:23 - The FDA is particularly interested in getting safety information communicated to people who do not have access to the internet, but they did not invite anyone to the panel who could speak to that
13:23 - Danielle explains how listeners can submit comments that will be read by the FDA about safety communications
15:32 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us
15:57 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org
16:06 - Danielle thanks listeners and asks everyone to consider supporting the show by donating at aiarthritis.org/talkshow
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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