
Rare Disease Day 2016
Event Information
Description
ONLINE REGISTRATION IS NOW CLOSED. On-site registration will be available in the Great Hall at the Massachusetts State House.
See you Monday!
Join MassBio, The MGH Center for Rare Neurologic Diseases, The MGH Frontotemporal Disorders Unit, member companies, patient groups, patients and legislators to recognize Rare Disease Day.
Rare Disease Day calls attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.
The Commonwealth joins a coalition of organizations recognizing the day, being coordinated by the National Organization for Rare Disorders (NORD), which includes patient organizations, professional societies, government agencies, medical researchers, pharmaceutical and biotechnology companies, and patients.
Please join us to recognize Rare Disease Day and the research being done in Massachusetts to treat and cure rare disease. Together, we can raise awareness of rare disease.
Would you like to visit with your legislator to advocate for Rare Disease? Email Susan Martin for help in arranging legislative meetings!
Interesting in being listed as a Partner Organization for Rare Disease Day? Email us!