Submitted by State Senator Michael Barrett
To raise awareness for rare diseases, State Sen. Mike Barrett presented an official citation to leaders of the Hereditary Angioedema Association alongside executives of Shire, a drug manufacturer whose U.S. headquarters for rare diseases is in Lexington.
Hereditary Angioedema Day is May 16th. The disease, which affects roughly 1 in 30,000 people, causes sporadic and potentially life-threatening swelling in the hands, feet, face and airways. Several years ago, Shire released a drug that reduces pain and swelling during attacks.
“My district is home to a host of companies — AstraZeneca and Genzyme in Waltham; Biogen in Weston, among others — whose products effectively fight disease,” points out Barrett, himself a healthcare IT specialist by profession. “Companies and advocates are making great progress on treatments that we don’t often hear about but that help people immensely.”
Barrett highlights the work of the National Organization for Rare Disorders, which does advocacy and conducts research, as well as PatientsLikeMe.com, which connects patients to each other and allows them to chart their history. Barrett adds, “I want Massachusetts to be the ideal location for firms focused on rare diseases. If we’re business-friendly to these innovators, we’ll save lives. ”