Rare Disease Day 2017: Patient Involvement in Research
28 February 2017
Massachusetts State House, Great Hall, 24 Beacon Street, Boston M, Boston, USA
Hosted by MassBio
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.
The last day of February has been designated as Rare Disease Day in Massachusetts to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.
The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2017 theme Patient Involvement in Research focuses on the crucial role that patients play in research. Patients are often experts in their disease. It is essential that research also involves patients at all steps of the research process. Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
Join us to recognize and raise awareness for rare disease and the research being done in Massachusetts to provide new treatments and cures.
Katie Brandt, Caregiver and Community Resource Specialist, Frontotemporal Disorders Unit, Massachusetts General Hospital (Emcee)
Mayor Martin Walsh, City of Boston (invited)
Dr. Francis Collins, Director, NIH (invited)
Dr. Peter Slavin, President & CEO, Massachusetts General Hospital (invited)
TBD, Co-Chair of the Massachusetts Biotech Caucus