Disease Profiles
The information on our website is provided to facilitate and encourage, and not in any way replace, advice and care from a patient’s healthcare professionals.
There are over 160 disease profiles on our list. All were prepared by volunteers, most of whom are not scientists. ARI’s Scientific Board has not reviewed these profiles. ARI’s Executive Team regularly reviews them, but it is not our only responsibility. If you find errors, please accept our apologies and please report them so we can correct them.
Name:
Many diseases have more than one name. We try to include all names that a patient may have been given for their disease so they can find information on our website and elsewhere. We used to include abbreviations (such as SLE) but those are being phased out since there are so many and they often are not unique.
Until the release of this list, it was difficult to find a clearinghouse for disease names. We are hoping this list will lead to standardized use of the disease names we use. We have 3 rules for naming:
We prefer scientific names over the name of a person who discovered the disease
We do not use acronyms or abbreviations (e.g., “systemic lupus erythematosus”, not “lupus”)
When needed, we use Arabic numerals in diseases that have numbers (for example, “autoimmune polyglandular syndrome 2”, not “PAS III”)
Patient Groups:
To appear in our profile, a patient group must be a nonprofit organization. It must also be focused on the disease and not a general organization that addresses a large number of diseases.
Bloggers:
We check to make sure that bloggers are not selling products, that they or a loved one suffers from the disease, and that there has been a post within the last year. If you know of a blogger we have missed, please contact us.
Prevalence and Age of Onset:
Prevalence statistics are provided in US Cases. More details can be found in the Autoimmune Diseases List. If you find errors or updated information, please report to us so we can correct the website.
Symptoms:
In the Autoimmune Registry Disease Profiles we include a list of symptoms. A symptom is something reported by a patient, such as pain, stiffness, fatigue. A sign is something observed by someone who is not the patient, such as a doctor or other medical practitioner.
In our Disease Profiles, we have tried to include only symptoms - things a patient can detect.
ARI is not a resource for medical professionals, and it is not in any way a substitute for information provided by your doctor. Our goal is to facilitate your interaction with your doctor, and if you or your doctor feel we are not serving this goal, please contact us.
