We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to comply with FDA regulations, the resources they put out have to meet a high standard of accuracy and reliability—that includes everything from websites to magazine ads to the brochures you find in the doctor’s office.
That’s good news for patients just starting to learn about an ultra-rare disease they’d never heard of until they were diagnosed with it.
Take CAPS, for example. It’s pretty rare, affecting one to two in every million people. Most people have never heard of it, so they’d be forgiven for not knowing CAPS actually refers to a group of three rare diseases: FCAS (Familial Cold Autoinflammatory Syndrome), MWS (Muckle-Wells Syndrome), and NOMID/CINCA (Neonatal-Onset Multisystem Inflammatory Disease, AKA Chronic Infantile Neurological Cutaneous Articular Syndrome). Don’t try to say that three times fast!
The symptoms are very different, but all are related to how the body reacts to inflammation. To help provide some baseline information about CAPS, Novartis Pharmaceuticals has published “The Facts About CAPS,” a brochure spelling out the unique symptoms of all three diseases and how to recognize them.
Norvartis does sell a medication called ILARIS® for adults and kids older than four with CAPS, but mentions of ILARIS are nowhere to be found on the brochure—the focus is all on the disease.
The brochure includes:
- questions to help you figure out if you should ask your doctor about CAPS
- a glossary of terms
- links to other reputable sites that will help you learn more
Brochures like this won’t fill in all the gaps in your disease knowledge—if anything, they’ll just get you started. But when you’re facing something new and frightening like a CAPS diagnosis, a good start is exactly what you need for the journey ahead.