Rare Disease Day | 2014
Rare Disease Day 2014
What makes a disorder “Rare”? According to the U.S. Census
and other demographics-aware specialists, it is because there
are fewer than 200,000 documented cases.
each child had to go over the differences in themselves. It was
interesting to hear 4 and 5 year olds showing what they saw
as differences and when it came to Marissa she had shorter
hair. It was better than we could have expected. I was very
proud.
But to anyone who has a child with a rare disease, or who has
lived with a little known disorder, it is rare because no one
knows how to spell it, pronounce it, ever heard of it, or can
discuss it in an intelligent and empathetic way.
As one parent said “It’s only rare until your kid has it”. Then
it becomes a commonplace and everyday condition of your
lives. You learn as much as you can, accept all the help that is
offered, learn to reach out to others who need what you have
learned, and make it your mission to spread the word however
you can.
In the past few years thousands of people have joined their
voices to ask the rest of the world “How rare will all these
conditions be once you look and see them?”
Rare Disease Day was February 28 – every four years it is
February 29, befitting its rare occurrence.
Thanks to everyone who got involved in spreading awareness
of SWS and PWB on February 28, 2014.
Karen Ball represented the Sturge-Weber Foundation in
Washington DC for Rare Disease Legislative Advocates
Conference and Lobby Day, February 25-27. This event
brought rare disease advocates together for networking events
and to lobby on behalf of individuals living with rare disease.
Marissa Terrell
sends us this
news: The teachers
and staff at “Just
Children” were kind
enough to put a
table together at the
front of the building
to celebrate Rare
Disease Day. They
also put an entry on
Facebook to let the other families of Marissa’s syndrome as
well as what the day r