Rare Disease Day on Beacon Hill


To raise awareness about more than 6,000 rare diseases

It's International Rare Disease Day. 22 News spoke
with state lawmakers about their efforts to raise awareness.

Thirty million people are affected by rare diseases in the country. A
disease is considered rare if it affects fewer than 200,000 people,
but everyone is impacted somehow.

"Most of us are patients in some way, and either likely know someone
or have a rare disease our self," said Sarah MacDonald from the
Massachusetts Biotechnology Council.

That's why state lawmakers, leaders in the Biotech industry and
patient groups gathered at the State House to call attention to the
more than 6,000 rare diseases afflicting us today.

The Biotechnology industry is growing rapidly in the state and
Cambridge is the center for these companies that research rare
diseases. Cambridge State Representative Marjorie Decker says it
impacts more than just her district.

"It's important to see that the value of someone's life needs to go
beyond how many people are impacted. It's our job to try to provide
resources to the health and well-being of our entire community," said
Cambridge State Representative Marjorie Decker.

According to the Rare Disease Day campaign, 50% of rare diseases
affect children. This event was just one of fifteen State House events
across the country to raise awareness for rare diseases.

By Tiffany Chan Updated:
Friday, February 28, 2014, 8:11 pm
Published: Friday, February 28, 2014, 5:58 pm