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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
Sunday Dec 29, 2019
Sunday Dec 29, 2019
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she gives the 2019 Year End Report on IFAA’s work to benefit the AiArthritis Community. You will have a front row seat as she explains the important work IFAA has been doing since its inception and the organization’s goals for 2020. IFAA needs your support to continue these projects. Learn how you can help make a difference in medical research, patient advocacy, pharmaceutical development, spreading awareness, public and physician education, and improving the quality of life of patients living with AiArthritis diseases.
Learn more about this episode and all the projects mentioned in this show at https://www.aiarthritis.org/podcast-ep7!
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!
00:56 – Tiffany welcome listeners
01:55 – IFAA was founded to prevent people from experiencing Tiffany’s struggle to obtain a diagnosis
03:10 – AiArthritis diseases that are not found early can result in permanent changes to a person’s life
04:15 – Please consider gifting to IFAA so that we can continue our mission
04:35 - IFAA is driven by the idea that patient experiences are key to finding solutions that impact education, advocacy, and research on AiArthritis diseases
07:00 - IFAA facilitated conversations among patients that helped to create a list of early symptoms of AiArthritis Diseases to help physicians and patients recognize symptoms as early in the disease progression as possible
8:00 - IFAA listens to all patient opinions and uses that input to create solutions
10:00 - In 2015, IFAA launched an investigation of the ethics of step therapy
14:05 - IFAA realized that insurance companies were basing decision on research gathered from clinical trials which excluded a majority of patients because their disease progression did not fit the standard
18:16 - IFAA established World AiArthritis Day to educate people about Autoimmune and Autoinflammatory Arthritis
18:45 - IFAA promotes understanding of the early symptoms of AiArthritis so that patients and physicians will seek input from rheumatologists sooner
20:04 - IFAA used this information to create early detection models and provided them to primary care physicians to assist in early identification of patients with AiArthritis symptom onset. We need your support to continue this work
21:00 - IFAA is actively seeking individuals who have symptoms but no diagnosis so that researchers can collect early symptom information that is not based on recall after the fact. This work is unprecedented and is based on needs identified by medical researchers.
22:37 - This work is funded by donations, not grants
23:00 - IFAA has spent a year developing AiArthritis Voices, an online forum for promoting education, advocacy, and research of AiArthritis Diseases
24:08 - AiArthritis Voices 360 Podcast was the result of an Innovation Award Grant
24:43 - This podcast was founded to give people around the world a voice in the important discussions about AiArthritis Diseases, even if they are not able to participate in online forums or medical conferences
25:55 - IFAA cannot continue our work with the online forum or the podcast without support from donors
26:20 - In 2019, IFAA started working on the Patient Reported Stills Disease Brochure Project to identify patient reported early symptoms of Stills Disease
28:35 - IFAA hopes to expand this project to create patient reported brochures for the other AiArthritis diseases
28:47 - IFAA attended 2 rheumatology conferences in 2019: American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) to collect information and disseminate it our members.
29:10 - IFAA needs donor funding to collect information at conferences and share it via the podcast and the online forum
30:00 - IFAA partnered with the Rheumatology Nurses Society on our precision medicine project as a result of meeting them at the ACR conference in 2018; attendance is important!
32:28 - In 2020, IFAA will develop an educational component to teach patients the difference between precision medicine and personalized medicine
34:15 - In 2020, IFAA will continue to develop the AiArthritis Voices online forum and seek to train patients to act as focus group moderators to decrease the cost of medical research
36:08 In 2020, IFAA will continue to focus on educating the public about biosimilar treatment options
37:38 - IFAA will continue working to protect access to treatment for patients with employer-provided health insurance in the US
41:00 - IFAA will be hosting our first Gala, The Auto Ball, on Friday, May 15th at the National Museum for Transportation in St Louis, MO, which will also serve as the official launch party countdown to World AUTOimmune & AUTOinflammatory Arthritis Day, May 20th. Let us know if you want to get involved!
44:24 - IFAA needs your support to continue the important work we are doing to benefit the AiArthritis Community
44:43 - One time gifts can be made at www.aiarthritis.org/donate
45:00 - Vocal Impact Partners can make a monthly gift beginning at $10 per month, Sign up at www.aiarthritis.org/VIP
46:15 - Tiffany thanks listeners for their support of the podcast and IFAA
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