{"id":8584,"date":"2011-02-27T10:00:44","date_gmt":"2011-02-27T15:00:44","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=8584"},"modified":"2011-02-25T15:37:28","modified_gmt":"2011-02-25T20:37:28","slug":"rare-disease-day-2011-raise-your-hand-to-help-millions-of-americans","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/02\/rare-disease-day-2011-raise-your-hand-to-help-millions-of-americans.html","title":{"rendered":"Rare Disease Day 2011: “Raise Your Hand To Help Millions of Americans”"},"content":{"rendered":"

<\/em><\/p>\n

\"Rare<\/a><\/p>\n

Again this year, as in 2009<\/a> and 2010<\/a>, 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:<\/em><\/p>\n

One profound shift in healthcare enabled by the internet is the Web\u2019s ability to be a common platform for huge numbers of low-volume diseases. This is the \u201clong tail\u201d effect that makes Amazon and eBay a success, selling vast numbers of items you never would have seen before the Web.<\/em><\/p>\n

The difference, of course, it that this isn\u2019t about obscure books; in this case lives are at stake.<\/em><\/p>\n

Here’s this year’s post, explaining how Wendy came to this cause.<\/em><\/p>\n

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 \u201cDetective Mom.\u201d 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.<\/p>\n

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<\/a>), 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<\/cite> of the nearly 7,000 types of rare diseases.<\/p>\n

\u201cPeople with rare diseases remain a medically underserved population in every country,\u201d said Peter Saltonstall, president of NORD. \u201cThis 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.\u201d<\/p>\n

<\/strong><\/p>\n

Raise Your Hand for Rare Diseases<\/strong><\/p>\n

<\/strong>So what can you do to increase awareness and help raise research funds? For the second year, Lundbeck Inc.<\/a>, 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.<\/p>\n

When an individual clicks the \u201cRaise Your Hand\u201d icon posted on the NORD Rare Disease Day website (http:\/\/rarediseaseday.us<\/a>), 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.<\/p>\n

<\/strong><\/p>\n

Research for Stiff-Person Syndrome<\/strong><\/p>\n

<\/strong>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.<\/p>\n

Learn more about what you can do to support Rare Disease Day on the Rare Disease Day U.S. website<\/a> and on Facebook<\/a>.<\/p>\n

Wendy White is Founder and President of Siren Interactive. Connect with her on Twitter: @sirenwendy<\/a>.<\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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