Living in the 21st century’s wireless information economy can be both a blessing and a curse—there’s so much information out there, you can learn pretty much anything about everything. But it’s hard to know where to start or which sites are reliable.
Yeah… I know no one wants to hear complaints about “First-World Problems.” But if you’ve just been diagnosed with a rare disease, wandering onto the internet to learn more is a real hazard. It’s not that there’s a shortage of information—it’s that there’s too much information, and not all of it is trustworthy.
So…how do you surf safely? You could:
- Ask your doctor for suggestions
- Turn to members of your support group (if you’ve joined one) for advice
- Roll the dice and see what Google gives you
But there’s one source you shouldn’t overlook: pharmaceutical company websites.
Yes, the same pharmaceutical companies that are out to make money selling their medications can also be a great source of disease education. Any pharma worth its salt knows that patients are hungry for information, and many companies have designed robust websites centered on patients’ information needs.
Take Genzyme’s FH Journey’s site.
As its name suggests, it looks at all aspects of familial hypercholesterolemia—what it is, how to recognize it, and how to talk to your doctor about it. And the focus isn’t necessarily treatment-based (though I’m sure they wouldn’t say “no” if you wanted to buy their drugs): It’s education-based.
Along with helpful downloads and checklists, the site also offers a resources page with links to outside sources like support groups, social networks, and medical information. It also links to non-profit organizations focused on FH and other blood disorders, including The FH Foundation and the Foundation of the National Lipid Association.
That’s not to say that all pharma sites are created equal, or that Genzyme’s is the final word in FH education.
But pharma companies have to carefully vet all their public-facing materials to comply with FDA regulations, so you can feel confident that the resources they recommend are more accurate and reliable than, say, “Bob’s FH Emporium.com.”
If nothing else, pharma resources sites serve as a good, free-launching pad for gathering the information and ideas you need to become a truly empowered patient.