Raise Your Hand to Support Rare Disease Research and Education

Russell-Silver Syndrome (2003)

Russell-Silver Syndrome (2003)

Many of us are touched by something in our lifetime that causes us to pause and wonder what actions on our part can make a positive impact.  Rare disease entered my life 10 years ago, when my son was diagnosed with Russell-Silver Syndrome.  With very little knowledge on the disease, physicians were unable to guide me on a course of action and/or treatment plan.  The first five years of my son’s life were by far, the most challenging and scariest times of our lives.  

On Tuesday, February 4, CheckOrphan shared the news of ‘Raise Your Hand to Support Rare Disease Research and Education’, a worldwide campaign for rare disease awareness…. 

http://www.checkorphan.org/grid/news/people/raise-your-hand-to-support-rare-disease-research-and-education

DEERFIELD, ILL. — Lundbeck and the National Organization for Rare Disorders (NORD) announced the fifth annual Raise Your Hand to Fight Rare Diseases campaign in support of Rare Disease Day, a worldwide observance on February 28 to increase awareness of rare diseases. When an individual clicks the Raise Your Hand icon posted on NORD’s Rare Disease Day website (http://rarediseaseday.us/), Lundbeck will make an unrestricted donation to NORD’s research grant fund. Since the launch of the campaign in 2010, more than 40,000 clicks have been generated in support of rare disease research. In recognition of the fifth anniversary of the campaign, Lundbeck is calling on the public to help reach a total of 50,000 clicks.

If you are struggling or question what YOU should do this year to make a positive impact – “Raise Your Hand” and support rare disease.  With over 7,000 rare diseases/conditions affecting an estimated 30 million Americans…..I guarantee, it’s worth it.

CheckOrphan is a non-profit organization located in Basel, Switzerland and Santa Cruz, California that is dedicated to rare, orphan and neglected diseases.

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