The fourth annual Raise Your Hand campaign launched this week, and it’s already creating a social media buzz.   This campaign, sponsored by Lundbeck, raises awareness and support for rare disease research.  It also gives a spark of hope to patients previously left on the sidelines in the quest for a treatment.

It’s an easy way to show support:  Each click on the “Raise Your Hand” symbol on NORD’s Rare Disease Day US website generates a $1 donation from Lundbeck to NORD’s general research fund, up to $10,000.

To date, the project has made it possible for NORD to issue research grants for the study of three rare diseases, all of which currently have no approved therapy:  stiff person syndrome, systemic sclerosis and primary immune thrombocytopenia.  The donations are used to “top off” disease-specific research funds that haven’t quite reached the level required for a study — $33,500.

These studies, while small, give patients and their families hope because promising results may lead to other studies down the road.  For instance, the 2010 Raise Your Hand grant was awarded to Eric Lancaster, MD, of the University of Pennsylvania  for a study of novel antibodies associated with study stiff person syndrome, a rare acquired neurological disorder.  That study was completed in September of 2012 and now Dr. Lancaster plans to continue this line of research, to try to determine what causes this extremely rare disease.

The campaign is conducted each year in conjunction with Rare Disease Day, which NORD sponsors in the U.S.  Supporters are encouraged to spread the word via Facebook, Twitter and other social media.

While clicking is easy, the funds “topped off” by this campaign often represent years of labor by families and friends of patients who raise money with golf tournaments, raffles and other activities.  To make the grants program possible, NORD’s medical advisors donate their time to review grant applications and interim and final reports.