In the last six years since IFAA has been a nonprofit, we have been “the patients at the table”. We have been the panelists and keynote speakers, focus group participants as well the moderators, grant reviewers alongside rheumatologists and researchers, and at the offices of policy makers. We have worked alongside over 5 dozen nonprofits, patient advocates, and advisors from all over the world, and are members of over a dozen coalitions. We have participated, both in person and remotely, in 100’s of seminars, conferences, webinars, and meetings.
All of these experiences have built our knowledge and expanded our resources to a level we never imagined possible. We have continuously been told, “You all are a wealth of knowledge!” so now it’s time we pass it on to the community, so you can benefit from it! So pull up a chair – we are going to connected YOU to all of the knowledge and resources we have collected, and will continue to gather. Let’s get Systemically Connected!
What makes Systemically Connected Unique?
Systemically Connected will not only turn all of our past, current, and future experiences into articles that will help you gain more information about topics that are important to you, but all discussions (including your comments) that follow each post will be collected and analyzed for research purposes and future project development.
And remember, we are patients too, so these conversations will be 100% patient led. The patient voice really does matter at IFAA!
What topics are on the table?
Based on our own experiences as patients and our communications with the patient community, we will talk about topics of most interest including:
- Autoimmunity – How can I explain it to others so they will understand?
- New Rheumatologist – What can happen? From new diagnosis to treatment changes and how to prepare for “the change”, it’s a real situation that many of us face.
- Autoimmune versus Autoinflammatory Diseases – What’s the difference? Which do I have and why does it matter?
- Biosimilars – What should I know?
- Misdiagnosis, Re-diagnosis, Dual Diagnosis – What’s going on?!
- “Patient-Centered Research” – It’s great the patient is being considered, but what the heck does all of this mean for me?
- Medical Marijuana – Let’s stir the pot
- It’s Not Your Grandma’s Arthritis – Enough said
Also, YOU can influence what comes to the table by sending us your topic recommendations via our Contact Us page!