A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

Raise Your Hand to Help Millions of Americans Affected by Rare Diseases

Posted by | 9:04am on Monday, February 7, 2011

Rare Disease Day is February 28, 2011, and Siren Interactive is proud to collaborate with NORD in order to raise awareness 

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.

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

View other posts from Wendy

9 Pingbacks/Trackbacks

    07 February 2011 at 4:02pm
    Learn about Rare Disease Day & ...
  • Eileen O'Brien
  • 07 February 2011 at 4:02pm
    RT @EileenOBrien: Learn about Rare ...
  • Larry Lynam
  • 07 February 2011 at 4:02pm
    RT @EileenOBrien: Learn about Rare ...
  • Dan Sfera
  • 07 February 2011 at 4:02pm
    RT @EileenOBrien: Learn about Rare ...
  • Dayna
  • 07 February 2011 at 9:02pm
    Read about "Raise Your Hand to ...
  • Craig Engesser
  • 10 February 2011 at 3:02am
    "Raise Your Hand to Help ...
  • Arly Iampietro
  • 10 February 2011 at 2:02pm
    RT @arlyi: "Raise Your Hand to ...
  • Michael Spitz
  • 04 March 2011 at 7:03pm
    [...] joined 25 other rare disease advocates outside the NBC 5 news studio to promote awareness of the Raise Your Hand with Lundbeck to Fight Rare ...
  • All Hands On Deck for Rare Disease Day | SIRENSONG
  • 19 June 2013 at 8:06am
    [...] me to see this type of exposure and collaboration on behalf of rare diseases. And as a mother of a daughter with a rare disease, it’s also ...
  • Advocating for treatments to change modern medicine
Siren Interactive
  • Siren Interactive
  • Rare Disease Relationship Marketing Experts
  • 626 West Jackson Blvd, Suite 100
  • Chicago, IL 60661
  • 312.204.6700
  • 866.502.6714 (Toll Free)
  • www.sireninteractive.com