Rare Disease Day 2017

Posts Tagged ‘Rare Disease Day’

Rare Disease Day 2017

 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 »

A Look Back at Rare Disease Day

Today’s post was written by Bert E. Thomas IV, PhD, CEO of the Sarcoma Foundation of America.   A little more than a year ago, I authored a blog post entitled, “Shedding Light on the Forgotten Cancer.”  I wrote this post in honor of Rare Disease Day, as a way of highlighting the needs of patients and families whose lives are touched by sarcoma – a rare cancer.  The year has flown by and we have once again observed another Rare Disease Day.  While Rare Disease Day always provides a wonderful opportunity to raise awareness and to unite our voices with those who…  Read More »

Sarcoma Advocacy: Rare Disease Week 2015

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 »