quality of life

Should you sign up with a research registry about your disease?

posted on November 1, 2006 - 1:42pm
It seems as if everybody wants information about you these days. Try to get that rebate the salesman promised on your new computer, and the company wants to know how old you are, how much money you make and whether you went to college. Phone surveys want to know what you think of your congressional representative, whether you’re planning to sell your house and what radio stations you listen to.
posted on December 1, 2002 - 12:34pm
In this article, the latest research news on: myasthenia gravis, spinal-bulbar muscular atrophy, inflammatory myopathies, FSH muscular dystrophy, tibial muscular dystrophy, periodic paralysis, carnitine deficiency, Duchenne muscular dystrophy, access to health care, ventilation use
posted on August 1, 2000 - 10:42am
Some people with neuromuscular diseases are experiencing grandparenthood, retirement and other welcome hallmarks of a long life. But the golden years may also bring some not-so-pleasant surprises. The future isn't what it used to be.