Rare Disease Day at the State Capitol

On Thursday morning, the National Association for Rare Disorders held a legislative breakfast at the State Capitol that I had the opportunity to attend. I was there in support of all people who suffer from various rare diseases, that face a multitude of challenges that they face on a day-to-day basis. We had the opportunity to listen to advocates, legislators, and those living with diseases who shared their experiences with us.

Among those who spoke this morning was Rachel O’Grady from Lyme, Connecticut. Rachel’s courage and advocacy for her illness was an inspiration, along with others who were in attendance that shared their stories. Rachel is my hero!  She’s currently studying for her master’s degree in social work at Boston College, and commutes to Boston by train several days a week!

The one point that rang clear was the need for us as a legislature to work together to support those in our communities with these diseases. I encourage you to read more at www.rarediseases.org.