Patients have many websites to choose from to get good information online. More importantly there are many sites that patients can go to where they can identify with someone else that has the same disease. Below is a snippet of a great article from CNN relating to this.
Patients find support, help via online networking
CNN Medical Correspondent
(CNN) — When Susannah Reid learned she had an extremely rare and aggressive cancer at age 41, she was hit with a double whammy.
She was told that no doctor in her home state of West Virginia had much experience treating it. Then when her sister found an expert out of state, her insurance refused to pay for treatment there.
“I was panicked. I cried for 36 hours straight,” says Beth Weiss, Reid’s older sister. “My sister has an 8-year-old child and a disabled husband.”
Late one night, Weiss went online looking for information about her sister’s disease, uterine leiomyosarcoma. And there she found the woman she calls her “godsend,” Dr. Doreen Kossove.