Rare Disease Day

Thursday, February 28 2013
2:00 pm – 3:00 pm

Location: State House, Boston, MA

Join MassBio, the Shwachman-Diamond Syndrome Foundation, member companies, patient groups, patients and legislators to recognize Rare Disease Day.


Thursday, February 28th

2 p.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.

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.

Speakers will include:

  • Sen. Karen Spilka and Rep. Joseph Wagner, co-chairs of the Massachusetts Biotech Caucus
  • Pamela Gavin, Senior Vice President, National Organization for Rare Disorders
  • Carla Charter, patient & mom of two children with Duplication 12q syndrome
  • Julie Flynn, patient with Von Hippel-Lindau syndrome (VHL)
  • Greg Costa, patient with Hereditary Angioedema
  • Blair Van Brunt (emcee)—parent and President, Shwachman Diamond Syndrome Foundation 
  • Musical performance by Gracie Van Brunt—Schwachman Diamond patient

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. 

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.

Supporting organizations

 SDSFNORDTSATay      acceleron      Genzyme

VHL     vertex    CHB

LTR     WI     promedior

shireeisai     organogenesis

TMSpfizerNF

alnylambluebird    Sarepta

   

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