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Celebrating Rare Disease Day

  • Broadcast in Health
Powerful Patient

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Dr. Ilene Sussman, Executive Director of the VHL Alliance, based in Boston, Massachusetts, speaks with Mike and Joyce about the celebration of Rare Disease Day being co-sponsored by the Alliance and the Massachusetts Biotechnology Council (MassBio), at the Massachusetts State House in Boston on February 28, 2014, 11-12 AM.


The VHL Alliance is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by Von Hippel-Lindau (VHL).

von Hippel-Lindau (VHL) is a genetic form of cancer. VHL patients battle a series of tumors throughout their lives. The VHL gene is involved in many other forms of cancer. Curing VHL is one step closer to curing cancer!

The Massachusetts Biotechnology Council (MassBio) is an association of more than 600 biotechnology companies, universities, academic institutions and others dedicated to advancing cutting edge research. MassBio is the leading advocate for Massachusetts’ world premier life sciences cluster. “We drive innovation by creating a forum for the biotechnology community to come together, educating the public and policy makers, influencing public policy and advancing the economic interests of individual companies, as well as the sector as a whole.”

The Rare Disease Day event will take place Friday, February 28, 2014, 11-12 in the morning, in Nurse’s Hall at the Massachusetts State House, on Beacon Hill in Boston. For more details, see http://www.massbio.org/events/calendar/2305-rare_disease_day/event_detail