Again this year, as in 2009 and 2010, we’re pleased to highlight Rare Disease Day (February 28), with a post from Wendy White of Siren Interactive. Here’s last year’s prolog:
One profound shift in healthcare enabled by the internet is the Web’s ability to be a common platform for huge numbers of low-volume diseases. This is the “long tail” effect that makes Amazon and eBay a success, selling vast numbers of items you never would have seen before the Web.
The difference, of course, it that this isn’t about obscure books; in this case lives are at stake.
Here’s this year’s post, explaining how Wendy came to this cause.
For the first two years of her life my daughter, Casey, had medical issues but no diagnosis of what was wrong. Despite some of the best doctors in one of the largest cities in America trying to find a diagnosis, it came down to me, her mother, doing Google searches. I became a “Detective Mom.” Desperate for knowledge, I was able to locate the information that eventually led to the diagnosis of a rare disease: nail-patella syndrome. Today, Casey is thriving, enjoying fourth grade, and playing goalie on a soccer team.
Unfortunately, my story is way too common. This is why Rare Disease Day is so important. Rare Disease Day, sponsored in the U.S. by the National Organization for Rare Disorders (NORD), is held every year on the last day of February. This year, Rare Disease Day is February 28, 2011, and Siren Interactive is proud to collaborate with NORD in order to raise awareness of the nearly 7,000 types of rare diseases.
“People with rare diseases remain a medically underserved population in every country,” said Peter Saltonstall, president of NORD. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”
Raise Your Hand for Rare Diseases
So what can you do to increase awareness and help raise research funds? For the second year, Lundbeck Inc., a pharmaceutical company dedicated to improving the lives of patients affected by complex central nervous system disorders and rare diseases, is sponsoring the Raise Your Hand to Fight Rare Diseases campaign.
When an individual clicks the “Raise Your Hand” icon posted on the NORD Rare Disease Day website (http://rarediseaseday.us), Lundbeck will make an unrestricted donation to NORD for rare disease research. Not only can people click, they can share the campaign through Facebook and Twitter to prompt others to participate.
Research for Stiff-Person Syndrome
NORD used the 2010 donation from Lundbeck to provide a research grant to Eric Lancaster, MD, PhD, of the University of Pennsylvania. Dr. Lancaster is studying stiff-person syndrome, a rare acquired neurological disorder that is believed to affect approximately one in 1 million people and is characterized by muscle rigidity, heightened sensitivity to stimuli and muscle spasms.
Learn more about what you can do to support Rare Disease Day on the Rare Disease Day U.S. website and on Facebook.
Wendy White is Founder and President of Siren Interactive. Connect with her on Twitter: @sirenwendy.
As a patient with multiple cavernous malformations, this is an excellent opportunity to share my story and help spread AWARENESS to a cerebrovascular disorder ‘unknown’ by the general public and many medical communities. Thank you! :)