Feb. 16, 2015
Posted by Christina Jensen
For the sixth year, we’re proudly partnering with the pharmaceutical company Lundbeck on the “Raise Your Hand to Fight Rare Diseases” campaign, which supports rare disease research in celebration of Rare Disease Day.
The campaign invites individuals to visit the Rare Disease Day U.S. website, http://rarediseaseday.us, and click on the “Raise Your Hand” icon during the month of February. Each unique click triggers Lundbeck to make a $1 donation to NORD’s research grant fund (up to a maximum donation of $10,000).
Rare Disease Day is an international awareness day held annually on the last day of February. NORD is proud to be the official U.S. sponsor for this important event.
In 2014, Lundbeck’s donation to NORD’s research fund helped initiate a study of Primary Orthostatic Tremor. Individuals who are affected by this rare movement disorder experience rapid tremor in their legs when standing, which can cause them to immediately attempt to sit or walk due to a fear of falling.3
In past years, Lundbeck’s donation helped initiate studies of five rare disorders:
- The 2013 donation supported two research projects for Dubowitz syndrome, a rare childhood disorder for which less than 200 cases have been documented in literature.4 This autosomal recessive disorder is characterized by micorcephaly, short stature, abnormal faces, and mild to severe mental retardation.4 The donation also supported one research project for Primary Lateral Sclerosis (PLS), a rare, neuromuscular disorder that is characterized by painless but progressive weakness and stiffness of the muscles and legs.5
- The 2012 donation supported a study of Primary Immune Thrombocytopenia (ITP) in adults, a bleeding disorder affecting an estimated 31,000 – 74,000 people in the U.S.6 Primary ITP is an autoimmune disorder characterized by a low platelet count and increased risk of mucocutaneous bleeding.6
- Funds from the 2011 donation support a study of systemic sclerosis, a rare autoimmune disorder affecting an estimated 49,000 people in the U.S.6 This disease causes damage to the skin, but also involves the tissues beneath, blood vessels, and major organs such as the intestines, lungs, heart, and kidneys.7
- The 2010 donation supported a study for Stiff-Person Syndrome (SPS), a rare, acquired neurological disorder8 believed to affect fewer than one in 1 million people.