Posts Tagged ‘Rare Disease Day’
Today’s post was written by Bert E. Thomas IV, PhD, MBA, CEO of the Sarcoma Foundation of America. Two years ago, I wrote a blog post in honor of Rare Disease Day. Entitled, “Shedding Light on the Forgotten Cancer,” it was a piece meant to raise awareness for a little known disease on a day designed to bring attention to a community of patients that are so often overlooked. It seems appropriate to share that post again as we are near Rare Disease Day 2017. On the last day of February, the rare disease community will collectively join voices and… Read More »
Each year, the last week of February is set aside as a time dedicated to raising awareness for the incredible needs of the rare disease community. Last month, several sarcoma advocates made the journey to Washington, DC, to participate in the activities of Rare Disease Week. Advocates from around the United States came together to participate in several events, including a legislative conference hosted by the Rare Disease Legislative Advocates (RDLA), as well as a day of meetings on Capitol Hill. During this time, advocates shared their stories with legislators and their staff to demonstrate why more needs to be… Read More »