Join MassBio, member companies, patient groups and legislators to recognize Rare Disease Day. Monday, February 28th
11 a.m.
State House, Nurses Hall 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. At the request of MassBio, Massachusetts biotech companies and patient advocacy organizations, Gov. Deval Patrick recently signed a proclamation declaring February 28th as Rare Disease Day. The Commonwealth joins a coalition of organizations recognizing the day, being coordinated by the National Organization for Rare Disorders (NORD), that includes patient organizations, professional societies, government agencies, medical researchers, and pharmaceutical and biotechnology companies. Speakers will include: - Blair Van Brunt, Shwachman Diamond Syndrome Foundation
- Diane Dorman, National Organization of Rare Diseases
- Neil Kirby, Edimer Pharmaceuticals
- Alison McVie-Wylie, Genzyme
- John Heffernan, MassBio
Please join us for this very special event, and feel free to spread the word to colleagues and other stakeholders. Together, we can raise awareness of rare disease. Questions? Email communications@massbio.org. |