IFAA's - "The Year of The Patient"
I am thrilled to share this exciting news with you! The International Autoimmune Arthritis Foundation is announcing 2014 as "The Year of The Patient"!
Here is just a peek at what the IFAA (International Foundation of Autoimmune Arthritis) has "in store"!
Isn't it ABOUT TIME!!! "You" the PATIENT was put as "#1" when it comes to your care???
In 2013, the International Foundation for Autoimmune Arthritis was created as an extension to the International Autoimmune Arthritis Movement 501c3 nonprofit, adding patient-centered research, advocacy, and support to the existing awareness, wellness education, and global network platform.
So what will happen in 2014?
Patient-Centered Research:
We will start off the year with our first patient-centered research grant, funded by Janssen Global, Inc, a study led by IFAA (patients) that will investigate the early signs and symptoms of these diseases, then comparing them to each other and to existing literature used for clinical diagnosis. The goal is to find correlation between the diseases early enough to promote quicker detection and referrals, as well as diagnosis and treatment. No more unnecessary disability!
In addition, Tami Brown, co-founder, has signed on as a permanent PCORI (patient-centered outcomes research institute) reviewer, and co-founder/CEO, Tiffany Westrich, was invited to serve on an ad-hoc basis as the 2nd patient ever to help NIAMS review their clinical grant submissions (National Institute of Arthritis, Musculoskeletal, and Skin Diseases). IFAA will also be applying for additional grants where the patient community works with researchers, but serves as the lead in the project instead of the consultant.
Wellness Education:
We will also be creating wellness education from the Janssen-funded study, aimed to educate both patients and practitioners in new, updated early detection strategies. Also, we will be creating education for patients (both juvenile and adult) that better explains how these diseases work on a cellular level, followed with outlines for a broad, cross-disciplinary treatment menu so patients can learn to choose the path best for their disease journey.
Awareness:
IFAA will continue hosting our Media Awareness Hotline, a service online where YOU can submit false or misinformation published or broadcasted about autoimmune arthritis diseases. Our team will combat the misinformation, working diligently to obtain a correction or retraction.
Support:
IFAA will be providing extra training for those existing volunteers who wish to work with JA patients, acting as advisors, friends, and sounding boards. JA'ers will have the opportunity, through the JA Mentorship Program, to submit questions about dealing with their disease (from how to select a college major, to dating, to advocacy) and our team will help answer those questions and provide advice.
World Autoimmune Arthritis Day 2014:
For the 3rd year IFAA will host WAAD, a 47 hour virtual convention held ONLINE that unites patients around the world with nonprofits, advocates, researchers and an abundance of education and resources- all of which they can DOWNLOAD to their own computer. More about WAAD14 coming soon!
This is just a sample of what 2014 will bring to patients, straight from the patients and volunteers who run IFAA. We are patients fighting for a better today and tomorrow, from our computers, beds, and sofas. As our CEO says, "Together we can move mountains. Bulldozers are so overrated."
Here's to a fantastic 2014!
(If you would like to donate to the IFAA or request more information about volunteering, please visit our website at www.IFAutoimmuneArthritis.
So what will happen in 2014?
Patient-Centered Research:
We will start off the year with our first patient-centered research grant, funded by Janssen Global, Inc, a study led by IFAA (patients) that will investigate the early signs and symptoms of these diseases, then comparing them to each other and to existing literature used for clinical diagnosis. The goal is to find correlation between the diseases early enough to promote quicker detection and referrals, as well as diagnosis and treatment. No more unnecessary disability!
In addition, Tami Brown, co-founder, has signed on as a permanent PCORI (patient-centered outcomes research institute) reviewer, and co-founder/CEO, Tiffany Westrich, was invited to serve on an ad-hoc basis as the 2nd patient ever to help NIAMS review their clinical grant submissions (National Institute of Arthritis, Musculoskeletal, and Skin Diseases). IFAA will also be applying for additional grants where the patient community works with researchers, but serves as the lead in the project instead of the consultant.
Wellness Education:
We will also be creating wellness education from the Janssen-funded study, aimed to educate both patients and practitioners in new, updated early detection strategies. Also, we will be creating education for patients (both juvenile and adult) that better explains how these diseases work on a cellular level, followed with outlines for a broad, cross-disciplinary treatment menu so patients can learn to choose the path best for their disease journey.
Awareness:
IFAA will continue hosting our Media Awareness Hotline, a service online where YOU can submit false or misinformation published or broadcasted about autoimmune arthritis diseases. Our team will combat the misinformation, working diligently to obtain a correction or retraction.
Support:
IFAA will be providing extra training for those existing volunteers who wish to work with JA patients, acting as advisors, friends, and sounding boards. JA'ers will have the opportunity, through the JA Mentorship Program, to submit questions about dealing with their disease (from how to select a college major, to dating, to advocacy) and our team will help answer those questions and provide advice.
World Autoimmune Arthritis Day 2014:
For the 3rd year IFAA will host WAAD, a 47 hour virtual convention held ONLINE that unites patients around the world with nonprofits, advocates, researchers and an abundance of education and resources- all of which they can DOWNLOAD to their own computer. More about WAAD14 coming soon!
This is just a sample of what 2014 will bring to patients, straight from the patients and volunteers who run IFAA. We are patients fighting for a better today and tomorrow, from our computers, beds, and sofas. As our CEO says, "Together we can move mountains. Bulldozers are so overrated."
Here's to a fantastic 2014!
(If you would like to donate to the IFAA or request more information about volunteering, please visit our website at www.IFAutoimmuneArthritis.
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