NTSAD Media Advisory for Rare Disease Day
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year was observed February 29, 2012. Anyone can be involved in Rare Disease Day. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.
In Boston, NTSAD was present at two events:
Massachusetts State House
Nurse's Hall
February 29, 2012 at 2:30pm.
Blyth Lord, a parent and NTSAD member, spoke eloquently about her family's experience with rare diseases.
The Whitehead Institute
Cambridge, MA
February 29, 2012
7:30pm to 9:30pm
The Whitehead institute is a leading, nonprofit research and educational institution in Cambridge, MA. They hosted a special event in honor of Rare Disease Day. During the program, scientists and biologists discussed their research on the fundamental biological processes underlying various rare diseases, including Tay-Sachs. NTSAD is proud to have been selected as one of five Partner Organizations for this event. Miguel Sena-Esteves, PhD, the Principal Investigator of the Tay-Sachs
Gene Therapy Consortium participated in a break-out session. He answered questions about the incredible progress in gene therapy - from its early stage discovery research to being on the verge of human clinical trials.
To learn more, please contact Sue at
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
or www.pulse.wi.mit.edu.
Other links related to Rare Disease Day on February 29, 2012:
National Organization of Rare Disorders (NORD) – NORD has set-up two websites that have other ideas for how to get involved:
http://rarediseaseday.us
http://www.rarediseaseday.org (global site)
