NORD: Patient Advocacy

MY VIDEO WAS SELECTED: “On August 1, NORD launched 35 Years and Growing: Personal Stories from the New Era of Patient Advocacy in which rare disease advocates shared their personal reflections on rare disease advocacy through self-recorded video. We were thrilled to see so many submissions come in for this campaign, and in honor of our 35th Anniversary, we have selected 35 submissions to be featured on our Youtube channel.”

I will continue to work to get the word out. (Remember this is self-recorded on my cell phone after a long day of work – so I look a little tired – because I was.)