Rare Disease Day

Friday, February 28 2014
11:00 am – 12:00 pm

Location: Nurses Hall, State House, Boston, MA

Rare Disease Day

Join MassBio, VHL Alliance, member companies, 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.

The Commonwealth joins a coalition of organizations recognizing the day, being coordinated by the National Organization for Rare Disorders (NORD), which includes patient organizations, professional societies, government agencies, medical researchers, pharmaceutical and biotechnology companies, and patients.

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. 

Speakers include:

  • Sen. Karen Spilka, Co-Chair, Biotech Caucus
  • Former Boston Mayor Ray Flynn, whose grandson has a rare physical disorder
  • Pamela Gavin, Chief Operating Officer, National Organization for Rare Disorders
  • Katie Brandt, Caregiver & Volunteer Coordinator, Association for Frontotemporal Degeneration
  • Carmen Camacho, Patient, Hermansky-Pudlak Syndrome Network Inc.
  • Ilene Sussman, Executive Director, VHL Alliance (Emcee)

 

Alone we are rare. Together we are strong.

MassBio will coordinate visits to legislative offices for any patient, patient advocate, industry advocate or other stakeholder who would like to participate. If you are interested, please email communications@massbio.org.

 

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