A helping hand for those with rare diseases
How the Raise Your Hand campaign can help millions affected by rare diseases
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 US 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, says 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.
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.
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 US website and on Facebook.
Wendy White is founder and president of Siren Interactive.