Join us at the University of Massachusetts Club
1 Beacon Street – 32nd Floor, Boston, MA 01239
Wednesday, February 28, 2018, beginning at 9AM
RDD Celebration Program from 11:30 AM to 12:30 PM
Join MassBio, The MGH Center for Rare Neurologic Diseases, The MGH Frontotemporal Disorders Unit, The National Organization of Rare Diseases, 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.
Every year, MassBio celebrates Rare Disease Day by bringing together nearly 300 industry stakeholders to elevate public understanding of rare diseases and call attention to the special challenges people with these ailments face.
The event convenes patient organizations, government agencies, medical researchers, life sciences companies and patients to share stories and recognize the great work being done in Massachusetts and beyond to provide new treatments and cures for diseases that affect nearly 30 million Americans.
Join us to recognize and raise awareness for rare disease and the research being done in Massachusetts to provide new treatments and cures.
- Representative Brian M. Ashe, Massachusetts House of Representatives
- Katie Brandt, Director of Caregiver Support Services, Frontotemporal Disorders Unit, Massachusetts General Hospital (Emcee)
- Bo Bigelow & Daniel DeFabio, co-founders, DISORDER, The Rare Disease Film Festival
- Michelle Hirsch Donovan, mother of a child with Neurofibromatosis, type 1 (NF1)
- Richard P. Kennedy, President, The Angel Fund for ALS Research
- Jen Melanson, patient with Hypoparathyroidism and CTLA4 Haploinsufficiency
Click here to register for this free event.