Participate in Rare Disease Day 2016

Jan 28, 2016

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.

Monday, February 29th
11 a.m.

State House, Great Hall, Boston

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.

Companies can participate by:

  1. Become a Massachusetts Rare Disease Day supporter! This means your organization will be listed in all of the materials we develop leading up to the event. There is no cost—we just need your organization’s logo! Contact Sarah MacDonald if you're interested.
  1. Nominate potential patient speakers. We try very hard to organize a speaking program that really allows patients to tell THEIR stories—why is research in Rare Disease important? Why do we need policies that protect innovation and access to breakthrough therapies? Nominate patient speakers (or caregivers, parents, children, etc.) online. Speaker nominations are due Jan. 7th.
  1. Register & spread the word—feel free to begin to tell colleagues, friends, partners to save the date for RDD 2016. This is one event where we open the doors wide—anyone who wants to show support for Rare Diseases is welcome to attend! Pre-registration is not required, but is appreciated. Register online!

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!

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