february, 2016

29feb11:00 am2:00 pmRare Disease Day 2016: The Patient Voice

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Event Details

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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 2016 theme Patient Voice recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers.

Join us to recognize and raise awareness for rare disease and the research being done in Massachusetts to provide new treatments and cures.

REGISTER NOW

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.

ALSO! MassBio\’s Legal & Regulatory Working Group will host a special Rare Disease Day Forum entitled The Patient Journey in Rare Disease Research and Development at 9 a.m. on February 29th in the Great Hall of the State House. Join us!

Time

(Monday) 11:00 am - 2:00 pm

Location

Great Hall

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