Guys, I’m really excited to be working with a great new 501c3 nonprofit called The Autoimmune Registry.
We are in the process of creating a hub for research, statistics, and patient data on all autoimmune illnesses. We also aim to establish prevalence of these disease, as right now the estimates for autoimmune disease prevalence are all over the map.
The Autoimmune Registry (a.k.a. ARI) operates a national database for patients who suffer from any autoimmune disease or diseases.
Our mission is to reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies.
We also aim to become a trusted source where patients with these diseases can find credible, scientifically-supported information about their diseases, promising treatments in the pipeline, and accurate prognosis insights. Whenever appropriate, we will redirect patients to our patient advocacy groups for further resources and information. Our goal is to really collaborate with patient advocacy groups (PAGs) as much as possible!
Currently, we are slowly rolling out “Disease Spotlight” blog posts a couple of times a week, highlighting different autoimmune conditions. We’ve also spoken with Healthline and are cultivating a list of all known autoimmune and autoimmune-associated diseases.
In the meantime, we are seeking funds, so any donation, large or small, will help our mission.
Most importantly, we need autoimmune patients like YOU to join our registry. Your story counts, and we are counting on you to make autoimmune diseases count, too!
All it takes is for you to fill out a FREE, EASY, SAFE, SIMPLE, and SECURE online survey about your health and your history with autoimmunity.
ARI never shares sensitive, personal, identifying data without your permission. Researchers can easily obtain counts using our Data Explorer. And if there is a pertinent study, patients will be asked if they’d like to send their data to researchers. Having anonymized data available to autoimmune researchers, in my personal opinion, can only mean good things for those of us with autoimmune diseases!
Learn more about the Autoimmune Registry here.
And let me know if you live with an autoimmune illness and wish to guest blog for the Autoimmune Registry website!