Rant Ahead! Together We Can Make Change
AiArthritis Voices 360 Episodio completo 68
Fecha de emisión: 5 de diciembre de 2021
En este episodio, AiEl director ejecutivo de Arthritis, y persona que vive con espondiloartritis axial, saca a relucir un tema con el que todos pueden identificarse... las quejas.
Todos experimentamos momentos de frustración, cuando algo en lo que creemos, que deseamos que suceda, que anhelamos que sea diferente, llega a un punto en el que necesitamos desahogarnos. A veces, ese desahogo es para nosotros mismos; otras veces, es público, para que todos lo vean. Nos desahogamos buscando apoyo, para impulsar un cambio, para ser escuchados o simplemente para quitarnos algo de encima. Sea cual sea el motivo, a veces es necesario.
Tiffany plantea dos cuestiones directamente relacionadas con sus quejas. La primera se basa en años de deseo de que las organizaciones de pacientes sean más aceptadas y participen más en las convenciones anuales del Colegio Americano de Reumatología (ACR).
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!
Click here to submit a rant!
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
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!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The
AiArthritis Voices Program
Nuestro AiEl programa de entrevistas Arthritis Voices 360 es solo una parte de un programa más amplio: AiPrograma Voces de la Artritis.
AiArthritis Voices es nuestro programa dondepersonas que viven con AiEnfermedades artríticas y otras partes interesadasQuienes necesitamos "en la mesa de negociaciones" para resolver los problemas que afectan a la educación, la defensa de los derechos y la investigación, se inscriben para tener voz en nuestras iniciativas.
Si desea participar más y ver más oportunidades que tenemos para usted (y para todas las partes interesadas), consulte la
AiPrograma Voces de la Artritis. Únete a personas de todo el mundo para hablar, aprender y conectar.
Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?
Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
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