NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

Why I Dislike Being Called ‘Strong’

In my previous column, I talked about the day I received my diagnosis. I got through the following weeks by telling myself that nothing in my life had changed, and that I had no choice but to move forward. I knew time was not going to stop…

Thank You, Michael J. Fox

My husband and I were standing in a line of hundreds of people waiting to meet Michael J. Fox, one of the stars of the “Back to the Future” trilogy of movies. All around us were adults dressed up as their favorite comic and movie characters. We had…

What to Do When You’re Overthinking Illness

Caregiving is an honorable position because it involves a lot of love. It also includes questions that begin with, “What if?” As you may know, my wife was diagnosed with Huntington’s disease last year. Right now, life is “good.” I put that word in quotation marks because her symptoms…