Rare Diseases In the News

By Mary Kugler, R.N., About.com Guide to Rare Diseases

Rare disease stories and articles in the news, plus the background info about the disease.

1. Famous people and rare diseases
2. Hot Topics

Famous people and rare diseases

Famous people who either have a rare disease themselves or are a spokesperson for a rare disease national organization.

• William "The Refrigerator" Perry has Guillain-Barre syndrome
• Harrison Ford, Brendan Fraser in Pompe disease movie
• Jett Travolta, Kawasaki disease survivor, dies in Bahamas
• Comedian Bernie Mac had sarcoidosis

• Paula Abdul reveals battle with reflex sympathetic dystrophy (RSD)
• Dara Torres' coach, Michael Lohberg, diagnosed with aplastic anemia
• World's tallest woman dies

Hot Topics

News about rare disease drug development, research, issues, and what people are talking about.

• How do people die from swine flu?
• Insmed, Genentech, and Ipsen/Tercica issue statement about IPLEX for ALS
• Diagnosis of congenital heart disease still frequently missed or delayed

• Use of rituximab as ITP treatment being studied
• FDA approves first drug for treatment of chorea in Huntington’s disease
• FDA requests "black box" warning on Cipro and related antibiotics